The Long Haul: Forging a Path Through the Lingering Effects of COVID-19 (House Hearing, April 28, 2021)
Summary
Printed record of a virtual hearing of the Subcommittee on Health of the Committee on Energy and Commerce on April 28, 2021 (Serial No. 117-25), titled "The Long Haul: Forging a Path Through the Lingering Effects of COVID-19", with Chairwoman Anna G. Eshoo presiding. Witnesses include Francis S. Collins of the National Institutes of Health, John T. Brooks of the Centers for Disease Control and Prevention, long COVID patients Natalie Hakala and Chimere L. Smith, Lisa McCorkell of the Patient-Led Research Collaborative, Jennifer D. Possick of Yale-New Haven Hospital and Steven Deeks of the University of California, San Francisco. At the close Ms. Eshoo asks unanimous consent to place 12 documents in the record, and Mr. Guthrie does not object.
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“The Long Haul: Forging a Path Through the Lingering Effects of COVID-19 (House Hearing, April 28, 2021).”
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[House Hearing, 117 Congress]
[From the U.S. Government Publishing Office]
THE LONG HAUL: FORGING A PATH THROUGH
THE LINGERING EFFECTS OF COVID-19
=======================================================================
VIRTUAL HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED SEVENTEENTH CONGRESS
FIRST SESSION
__________
APRIL 28, 2021
__________
Serial No. 117-25
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Published for the use of the Committee on Energy and Commerce
govinfo.gov/committee/house-energy
energycommerce.house.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
47-313 PDF WASHINGTON : 2022
-----------------------------------------------------------------------------------
COMMITTEE ON ENERGY AND COMMERCE
FRANK PALLONE, Jr., New Jersey
Chairman
BOBBY L. RUSH, Illinois CATHY McMORRIS RODGERS, Washington
ANNA G. ESHOO, California Ranking Member
DIANA DeGETTE, Colorado FRED UPTON, Michigan
MIKE DOYLE, Pennsylvania MICHAEL C. BURGESS, Texas
JAN SCHAKOWSKY, Illinois STEVE SCALISE, Louisiana
G. K. BUTTERFIELD, North Carolina ROBERT E. LATTA, Ohio
DORIS O. MATSUI, California BRETT GUTHRIE, Kentucky
KATHY CASTOR, Florida DAVID B. McKINLEY, West Virginia
JOHN P. SARBANES, Maryland ADAM KINZINGER, Illinois
JERRY McNERNEY, California H. MORGAN GRIFFITH, Virginia
PETER WELCH, Vermont GUS M. BILIRAKIS, Florida
PAUL TONKO, New York BILL JOHNSON, Ohio
YVETTE D. CLARKE, New York BILLY LONG, Missouri
KURT SCHRADER, Oregon LARRY BUCSHON, Indiana
TONY CARDENAS, California MARKWAYNE MULLIN, Oklahoma
RAUL RUIZ, California RICHARD HUDSON, North Carolina
SCOTT H. PETERS, California TIM WALBERG, Michigan
DEBBIE DINGELL, Michigan EARL L. ``BUDDY'' CARTER, Georgia
MARC A. VEASEY, Texas JEFF DUNCAN, South Carolina
ANN M. KUSTER, New Hampshire GARY J. PALMER, Alabama
ROBIN L. KELLY, Illinois, Vice NEAL P. DUNN, Florida
Chair JOHN R. CURTIS, Utah
NANETTE DIAZ BARRAGAN, California DEBBBIE LESKO, Arizona
A. DONALD McEACHIN, Virginia GREG PENCE, Indiana
LISA BLUNT ROCHESTER, Delaware DAN CRENSHAW, Texas
DARREN SOTO, Florida JOHN JOYCE, Pennsylvania
TOM O'HALLERAN, Arizona KELLY ARMSTRONG, North Dakota
KATHLEEN M. RICE, New York
ANGIE CRAIG, Minnesota
KIM SCHRIER, Washington
LORI TRAHAN, Massachusetts
LIZZIE FLETCHER, Texas
------
Professional Staff
JEFFREY C. CARROLL, Staff Director
TIFFANY GUARASCIO, Deputy Staff Director
NATE HODSON, Minority Staff Director
Subcommittee on Health
ANNA G. ESHOO, California
Chairwoman
G. K. BUTTERFIELD, North Carolina BRETT GUTHRIE, Kentucky
DORIS O. MATSUI, California Ranking Member
KATHY CASTOR, Florida FRED UPTON, Michigan
JOHN P. SARBANES, Maryland, Vice MICHAEL C. BURGESS, Texas
Chair H. MORGAN GRIFFITH, Virginia
PETER WELCH, Vermont GUS M. BILIRAKIS, Florida
KURT SCHRADER, Oregon BILLY LONG, Missouri
TONY CARDENAS, California LARRY BUCSHON, Indiana
RAUL RUIZ, California MARKWAYNE MULLIN, Oklahoma
DEBBIE DINGELL, Michigan RICHARD HUDSON, North Carolina
ANN M. KUSTER, New Hampshire EARL L. ``BUDDY'' CARTER, Georgia
ROBIN L. KELLY, Illinois NEAL P. DUNN, Florida
NANETTE DIAZ BARRAGAN, California JOHN R. CURTIS, Utah
LISA BLUNT ROCHESTER, Delaware DAN CRENSHAW, Texas
ANGIE CRAIG, Minnesota JOHN JOYCE, Pennsylvania
KIM SCHRIER, Washington CATHY McMORRIS RODGERS, Washington
LORI TRAHAN, Massachusetts (ex officio)
LIZZIE FLETCHER, Texas
FRANK PALLONE, Jr., New Jersey (ex
officio)
C O N T E N T S
----------
Page
Hon. Anna G. Eshoo, a Representative in Congress from the State
of California, opening statement............................... 2
Prepared statement........................................... 3
Hon. Brett Guthrie, a Representative in Congress from the
Commonwealth of Kentucky, opening statement.................... 4
Prepared statement........................................... 5
Hon. Frank Pallone, Jr., a Representative in Congress from the
State of New Jersey, opening statement......................... 6
Prepared statement........................................... 7
Hon. Cathy McMorris Rodgers, a Representative in Congress from
the State of Washington, opening statement..................... 8
Prepared statement........................................... 9
Witnesses
Francis S. Collins, M.D., Director, National Institutes of
Health, Department of Health and Human Services................ 10
Prepared statement........................................... 13
Answers to submitted questions............................... 231
John T. Brooks, M.D., Chief Medical Officer, CDC COVID-19
Response, Centers for Disease Control and Prevention,
Department of Health and Human Services........................ 18
Prepared statement........................................... 20
Answers to submitted questions............................... 236
Natalie Hakala, Collegiate Middle-Distance Runner and Long COVID
Patient, Eugene, OR............................................ 87
Prepared statement........................................... 89
Chimere L. Smith, Long COVID Patient Advocate for Urban
Communities, Baltimore, MD..................................... 94
Prepared statement........................................... 96
Submitted questions for the record \1\ 238
Lisa McCorkell, Team Lead and Researcher, Patient-Led Research
Collaborative, Oakland, CA..................................... 101
Prepared statement........................................... 103
Jennifer D. Possick, M.D., Associate Professor, Pulmonary,
Critical Care and Sleep Medicine, and Medical Director,
Winchester Center for Lung Disease, Yale-New Haven Hospital.... 120
Prepared statement........................................... 122
Answers to submitted questions............................... 241
Steven Deeks, M.D., Professor of Medicine, University of
California, San Francisco...................................... 127
Prepared statement........................................... 129
Submitted Material
Letter of April 21, 2021, from Mr. Burgess, et al., to Hon. Nancy
Pelosi, Speaker, House of Representatives, submitted by Ms.
Eshoo.......................................................... 154
Letter of April 27, 2021, from Gary L. LeRoy, Board Chair,
American Academy of Family Physicians, to Ms. Eshoo and Mr.
Guthrie, submitted by Ms. Eshoo................................ 158
Statement of the American Academy of Physical Medicine and
Rehabilitation, April 28, 2021, submitted by Ms. Eshoo......... 162
----------
\1\ Ms. Smith did not answer submitted questions for the record by the
time of publication.
Letter of April 27, 2021, from Michael O. Leavitt and Nancy-Ann
DeParle, Co-conveners, COVID Patient Recovery Alliance, to Mr.
Pallone, et al., submitted by Ms. Eshoo........................ 172
Statement of the Council for Quality Respiratory Care, submitted
by Ms. Eshoo................................................... 174
Statement of Rajarshi Banerjee, April 28, 2021, submitted by Ms.
Eshoo.......................................................... 180
Statement, ``A Call to Action: Immediate Deployment Of Select
Repurposed Drugs For COVID-19 Outpatient Treatment,'' by Vikas
P. Sukhatme and Vidula V. Sukatme, submitted by Ms. Eshoo...... 185
Statement of the American Physical Therapy Association, April 28,
2021, submitted by Ms. Eshoo................................... 191
Letter of April 27, 2021, from Thomas F. Bumol, Executive Vice
President and Director, Allen Institute for Immunology, to Mrs.
Rodgers, submitted by Ms. Eshoo................................ 195
Statement of Survivor Corps by Natalie Lambert, et al., April 28,
2021, submitted by Ms. Eshoo................................... 197
Statement of Survivor Corps by Diana Berrent, Founder, et al.,
April 28, 2021, submitted by Ms. Eshoo......................... 209
Report of April 2021, ``Survivor Corps Overview,'' submitted by
Ms. Eshoo...................................................... 213
THE LONG HAUL: FORGING A PATH THROUGH THE LINGERING EFFECTS OF COVID-19
----------
WEDNESDAY, APRIL 28, 2021
House of Representatives,
Subcommittee on Health,
Committee on Energy and Commerce,
Washington, DC.
The subcommittee met, pursuant to call, at 11:26 a.m., via
Cisco Webex online video conferencing, Hon. Anna G. Eshoo
(chairwoman of the subcommittee) presiding.
Members present: Representatives Eshoo, Butterfield,
Matsui, Castor, Sarbanes, Welch, Schrader, Cardenas, Ruiz,
Dingell, Kuster, Kelly, Barragan, Blunt Rochester, Craig,
Schrier, Trahan, Fletcher, Pallone (ex officio), Guthrie
(subcommittee ranking member), Upton, Burgess, Griffith,
Bilirakis, Bucshon, Hudson, Carter, Dunn, Curtis, Joyce, and
Rodgers (ex officio).
Also present: Representatives Schakowsky, Doyle, Clarke,
and Rice.
Staff present: Joe Banez, Professional Staff Member;
Jeffrey C. Carroll, Staff Director; Waverly Gordon, General
Counsel; Tiffany Guarascio, Deputy Staff Director; Perry
Hamilton, Clerk; MacKenzie Kuhl, Digital Assistant; Aisling
McDonough, Policy Coordinator; Meghan Mullon, Policy Analyst;
Kaitlyn Peel, Digital Director; Tim Robinson, Chief Counsel;
Chloe Rodriguez, Clerk; Kylea Rogers, Staff Assistant;
Kimberlee Trzeciak, Chief Health Advisor; C.J. Young, Deputy
Communications Director; Sarah Burke, Minority Deputy Staff
Director; Theresa Gambo, Minority Financial and Office
Administrator; Grace Graham, Minority Chief Counsel, Health;
Caleb Graff, Minority Deputy Chief Counsel, Health; Nate
Hodson, Minority Staff Director; Peter Kielty, Minority General
Counsel; Emily King, Minority Member Services Director; Clare
Paoletta, Minority Policy Analyst, Health; Kristin Seum,
Minority Counsel, Health; Kristen Shatynski, Minority
Professional Staff Member, Health; Olivia Shields, Minority
Communications Director; Michael Taggart, Minority Policy
Director; and Everett Winnick, Minority Director of Information
Technology.
Ms. Eshoo. The Subcommittee on Health will now come to
order.
Thank you, Members, for your patience, and the witnesses.
We had technical difficulties because of, evidently, a
potential tornado somewhere in our country. So thank you to the
team for getting us connected. And I want to welcome everyone
to our very important hearing this morning.
Due to COVID-19, today's hearing obviously is being held
remotely. All Members and witnesses are participating via video
conferencing.
As part of our hearing, microphones will be set on mute to
eliminate background noise. Members and witnesses, you will
need to unmute your microphone each time you wish to speak.
Documents for the record--and this is for all the Members and
their offices--should be sent to Meghan Mullon at the email
address that we provided to your staff. And all documents will
be entered into the record at the conclusion of the hearing.
The Chair now recognizes herself for 5 minutes for an
opening statement.
OPENING STATEMENT OF HON. ANNA G. ESHOO, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
This morning's hearing is to examine the trends and
research into long COVID, a chronic syndrome occurring in
patients infected by COVID-19. This is the first congressional
hearing focused on this issue. The few large-formal studies
conducted on long COVID hint at an alarming scale of people
with the illness.
Last week, CDC published a study finding that among adults
with COVID who did not require a hospital stay, two out of
three had at least one outpatient visit 1 to 6 months after
diagnosis. People with long COVID report experiencing different
combinations of symptoms, including fatigue, brain fog,
headache, loss of smell or taste, shortness of breath, and
chronic pain. Since this disease affects multiple body systems,
the symptoms can be much more extensive.
This research suggests that in the United States, where
there have been more than 32 million confirmed COVID-19 cases,
there could be millions of long-haulers with chronic symptoms.
Our health system is facing an avalanche of long COVID
patients, and I hear every day from constituents suffering from
the long-term effects of the virus.
Our expert witnesses today will provide the latest
information on the lingering effects of COVID-19 and the
limited options for treatment. We will also hear firsthand from
long-haul patients. They will provide a perspective that we
wouldn't get from statistics and medical studies. So we are
very grateful to them for their willingness to share their
experience with us. And certainly they will underscore the
human cost of long COVID.
Long-COVID patients don't fit the common narrative of
COVID-19--a patient being an elderly person, for example, with
preexisting conditions. And they cover, really, right across
our communities. They are elite athletes, they are midcareer
professionals. And because of this, many long-haulers struggle
to be taken seriously by our medical system, especially--and
here we go again--especially Black women and women of color.
My fear is that, as acute COVID uncovered our Nation's
failures at emergency response and equitable healthcare, long
COVID will uncover our failures at fairly treating chronic
disease and disability.
For sure, Federal leadership is going to be needed to
coordinate and address the swell of the long-haul COVID
patients. We may need a nationwide network of long-COVID
clinics with multidisciplinary clinical teams. Long-COVID
patients are also finding gaps that need to be filled in our
safety net, such as disability insurance, workplace
accommodations, and comprehensive insurance coverage.
There is hope on the horizon, though, having stated all the
things that I have. In the next few days, the NIH will announce
millions of dollars in grant funding for long-COVID
researchers. Also, with every American adult now eligible for
the COVID-19 vaccine, we will prevent future long-COVID cases,
and in some cases perhaps reduce long-COVID patients' symptoms.
These patients are showing us how to rebuild a better health
system for the millions of Americans who are disabled or have
chronic conditions.
[The prepared statement of Ms. Eshoo follows:]
Prepared Statement of Hon. Anna G. Eshoo
This morning's hearing is to examine the trends and
research into long COVID, the chronic syndrome occurring in
patients infected by COVID-19. This is the first congressional
hearing focused on long COVID.
The few large, formal studies conducted on long COVID hint
at an alarming scale of people with the illness. Last week CDC
published a study finding that among adults with COVID who did
not require a hospital stay, 2 out of 3 had at least one
outpatient visit 1 to 6 months after diagnosis.
People with long COVID report experiencing different
combinations of symptoms, including fatigue, brain fog,
headache, loss of smell or taste, shortness of breath, and
chronic pain. Since this disease affects multiple body systems,
the symptoms can be much more extensive.
This research suggests that in the U.S. where there've been
more than 32 million confirmed COVID-19 cases, there could be
millions of long-haulers with chronic symptoms. And our health
system is facing an avalanche of long-COVID patients. I hear
every day from constituents suffering from the long-term
effects of the virus.
Our expert witnesses today will provide the latest
information on the lingering effects of COVID-19 and the
limited options for treatment.
We'll also hear firsthand from long-haul patients. These
patients provide a perspective that we wouldn't get from
statistics and medical studies. They'll share the human cost of
long COVID.
Long-COVID patients don't fit the common narrative of a
COVID-19 patient being an elderly person with preexisting
conditions. They are elite athletes and mid-career
professionals. Because of this, many long haulers have
struggled to be taken seriously by our medical system,
especially Black women and women of color.
My fear is that as acute COVID uncovered our Nation's
failures at emergency response and equitable healthcare, long
COVID will uncover our failures at fairly treating chronic
disease and disability.
We'll need Federal leadership to coordinate and address the
swell of long-COVID patients. We may need a nationwide network
of long-COVID clinics with multidisciplinary clinical teams.
Long-COVID patients are also finding gaps that need to be
filled in our safety net, such as disability insurance,
workplace accommodations, and comprehensive insurance coverage.
There is hope on the horizon. In the next few days the NIH
will announce millions of dollars in grant funding for long-
COVID researchers. Also, with every American adult now eligible
for the COVID-19 vaccine, we will prevent future long-COVID
cases and, in some cases, perhaps reduce long-COVID patients'
symptoms. These patients are showing us how to rebuild a better
health system for the millions of Americans who are disabled or
have chronic conditions.
Ms. Eshoo. The Chair now recognizes my friend and ranking
member of our subcommittee, Mr. Guthrie, for his 5 minutes for
an opening statement.
It is great to see you.
OPENING STATEMENT OF HON. BRETT GUTHRIE, A REPRESENTATIVE IN
CONGRESS FROM THE COMMONWEALTH OF KENTUCKY
Mr. Guthrie. Great to see you. Thanks, Chair Eshoo, for
holding this hearing. And I want to welcome everybody,
especially our witnesses that are with us today.
Unfortunately, over 31 million Americans have tested
positive for COVID-19, and some of these Americans experience
symptoms weeks and months after being infected with COVID-19.
And today we will examine the long-term effects of this life-
threatening virus.
These long-term effects are often referred to as post-acute
COVID-19 or long COVID. We still have many questions about how
individuals recover from this terrible virus.
Last May, I joined the--Chair Eshoo, Representatives
Burgess, DeGette, and Trone, introducing the Ensuring
Understanding of COVID-19 to Protect Public Health Act. And
this bill requires NIH, in consultation with CDC, to conduct a
longitudinal study on the health impacts of COVID-19.
At the time, we were just starting to learn about COVID-19
long-haulers and some of the side effects this virus has on a
percentage of Americans post-COVID-19 infection. At the end of
last year, Congress came together to include $1.15 billion in
the December funding package for just this reason, to learn
more about this issue.
While we know more today than last year, we still have many
unanswered questions. In America, we are fortunate to have
access to the best medical experts in the world, who are
diligently working to quickly find answers to these questions.
I want to thank Dr. Collins and Dr. Brooks for being here
today to explain what is currently understood about this
condition and provide an update on what NIH and CDC are doing
to further study long-term COVID.
I also want to thank the witnesses on the second panel. I
look forward to hearing and learning from you more about how
you are helping patients with long-term COVID, and for the
patient witnesses, how COVID-19 is still impacting you.
I was pleased to learn that in December, the National
Institute of Allergy and Infectious Diseases, in collaboration
with other institutes and centers of the NIH, hosted a workshop
on postacute sequelae of COVID-19 to examine the knowledge gaps
that we currently have regarding the long-term effects that
some individuals are experiencing.
Additionally, I appreciate CDC efforts to educate the
public on the symptoms that might present themselves as long
COVID.
I want to help get people back to work and back to their
daily lives before COVID-19. However, people have reported that
long-COVID symptoms are preventing them from returning to their
jobs and making it more difficult to do many activities they
once easily could.
We must help patients receive proper treatments and learn
ways to resolve these symptoms. I often hear of long-COVID
cases, and each one seems to be different with varying symptoms
and severity. Studying these patients will be valuable and
instrumental in the many Americans' day-to-day life post COVID.
Lastly, I want to take this time to encourage all Americans
to get vaccinated. There is no better protection for this
terrible virus than one of the FDA-approved vaccines that are
currently available. Long COVID can be avoided with
vaccination. Operation Warp Speed and American innovation has
led to three safe and effective vaccines being approved. Now it
is time to put your guard down--or rather get--now is not time
to put your guard down but, rather, get vaccinated to protect
yourself and those around you.
Thank you, Chair. And I yield back.
[The prepared statement of Mr. Guthrie follows:]
Prepared Statement of Hon. Brett Guthrie
Chair Eshoo, thank you for holding this important hearing
today.
Unfortunately, over 31 million Americans have tested
positive for COVID-19, and some of these Americans experience
symptoms weeks and months after being infected with COVID-19.
Today we will examine the long-terms effects of this life-
threatening virus. These long-term effects are often referred
to as post-acute COVID-19, or long COVID. We still have many
questions about how individuals recover from this terrible
virus.
Last May, I joined Chair Eshoo, Rep. Burgess, Rep. DeGette,
and Rep. Trone in introducing the Ensuring Understanding of
COVID-19 to Protect Public Health Act. This bill requires the
National Institutes of Health (NIH), in consultation with the
Centers for Disease Control and Prevention (CDC), to conduct a
longitudinal study on the health impacts of COVID-19. At the
time, we were just starting to learn about COVID ``long-
haulers'' and some of the side effects this virus has on a
percentage of Americans post COVID-19 infection.
In December, Congress came together to include $1.15
billion in the December funding package for just this reason--
to learn more about this issue.
While we know more today than last year, we still have many
unanswered questions. In America, we are fortunate to have
access to the best medical experts in the world who are
diligently working to quickly find answers to these questions.
I want to thank Dr. Collins and Dr. Brooks for being here
today to explain what is currently understood about this
condition and provide an update on what NIH and CDC are doing
to further study long COVID. I also want to thank the witnesses
on the second panel. I look forward to learning more about how
COVID-19 is still impacting you.
I was pleased to learn that in December the National
Institute of Allergy and Infectious Diseases (NIAID), in
collaboration with other institutes and centers of the National
Institutes of Health, hosted a Workshop on Post-acute Sequelae
of COVID-19 to examine the ``knowledge gaps'' that we currently
have regarding the long-term effects that some individuals are
experiencing.
Additionally, I appreciate CDC's efforts to educate the
public on the symptoms that may present themselves as long
COVID. I want to help get people back to work. However, people
have reported that long-COVID symptoms are preventing them from
returning to their jobs. We must help patients receive proper
treatments and learn ways to resolve these symptoms. I often
hear of long-COVID cases and each one seems to be different
with varying symptoms and severity. Studying these patients
will be valuable and instrumental in many Americans' day-to-day
life post COVID.
Lastly, I want to take this time to encourage all Americans
to get vaccinated. There is no better protection from this
terrible virus than one of the FDA approved vaccines that are
currently available. Long COVID can be avoided with
vaccination. Operation Warp Speed and American innovation has
led to three and safe effective vaccines being approved. Now is
not the time to put your guard down but rather get vaccinated
to protect yourself and those around you.
Thank you Chair, I yield back.
Ms. Eshoo. The gentleman yields back. And the Chair thanks
him for essentially that call to arms.
The Chair now recognizes Mr. Pallone, the Chairman of the
full committee, for his 5 minutes for an opening statement.
OPENING STATEMENT OF HON. FRANK PALLONE, Jr., A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF NEW JERSEY
Mr. Pallone. Thank you, Chairwoman Eshoo.
We have been battling COVID-19 for more than a year now,
and while much has changed in terms of our knowledge and
ability to combat this disease, it continues to present these
new health challenges. And over 30 million Americans have
tested positive for COVID-19 over the last year, nearly 600,000
have died, and the loss has been devastating. And we are always
mindful of the toll this pandemic takes on our families and
friends and communities.
But over the last year, this subcommittee has played a key
role in responding to the ongoing public health crisis. Today,
we continue that crucial work as we discuss a consequence of
COVID-19 that is perplexing the scientific community.
A growing number of individuals are experiencing the
lingering effects of COVID-19 weeks and months after their
initial infection. These lingering symptoms are being described
as long COVID, and it seems to be impacting a lot of people who
are otherwise healthy.
A full picture of long COVID is still being drawn.
Generally, someone is considered to have long COVID if they
experience symptoms lasting longer than 4 weeks after their
initial infection. Symptoms can include persistent fatigue,
brain fog, headache, loss of smell and taste, dizziness,
shortness of breath, fever, depression, and anxiety. And in
more severe cases, the function of critical organs like the
heart and lungs can be affected. We have heard directly from
long-haulers that the continuation of their symptoms as well as
management of their care can be more of a battle than the
initial onset of the virus, both physically and mentally.
And early studies of long COVID are small in scale but
raise alarming trends. One study of about 4,000 found that
nearly 15 percent of the patients developed long COVID. The
study also suggests that people with multiple symptoms during
their initial infection, women, and older individuals are more
susceptible to long COVID.
And another recent study in Sweden found that long COVID is
prevalent among healthcare workers. They found that 1 in 10
young, healthy adults who initially had mild COVID symptoms
continued to struggle with moderate to severe symptoms months
later.
So our goal at this hearing is to learn more about long
COVID and what is being done to address it. On our first panel,
we hear from leaders of two of the world's leading public
health agencies, the National Institutes of Health and the
Center for Disease Control and Prevention. Both agencies are
actively monitoring long COVID and are in the process of
expanding their research. And I look forward to hearing from
our public health experts on that panel.
Our second panel will include professionals on the ground
who are treating and researching long COVID. And these doctors
are actively working to seek out answers to many of our
questions. And we will be joined by patients also on the second
panel who will share their own stories about the impacts that
long COVID have on their lives. It is important that we hear
directly from patients as we take a close look at what is
needed to make certain that they and other Americans with long
COVID reach a full recovery.
So even if a small fraction of COVID-19 patients develop
long COVID, hundreds of thousands, if not millions, of people
will require ongoing interdisciplinary care and may not be able
to maintain their quality of life or their gainful employment.
So we think it is our responsibility to ensure that we learn
more about this, to prevent it when possible, and to help
patients inflicted receive the proper treatment.
I hope this hearing will help us better understand how we
can support further research as well, but also how to prevent
and treat those who suffer from long COVID.
It is a very important hearing. Thank you, Madam
Chairwoman, for doing this. I yield back.
[The prepared statement of Mr. Pallone follows:]
Prepared Statement of Hon. Frank Pallone, Jr.
We have been battling COVID-19 for more than a year, and
while much has changed in our knowledge and ability to combat
this disease, it continues to present these new health
challenges.
And over 30 million Americans have tested positive for
COVID-19 over the last year, and nearly 600,000 Americans have
died as a result of this terrible virus. And we are always
mindful of the toll this pandemic is taking on our families,
friends and communities.
Over the last year, this subcommittee has played a key role
in responding to the ongoing public health crisis. Today, we
continue that crucial work as we discuss a consequence of
COVID-19 that is perplexing the scientific community. A growing
number of individuals are experiencing the lingering effects of
COVID-19 weeks and months after their initial infection. These
lingering symptoms are being described as long COVID, and it
seems to be impacting a lot of people who are otherwise
healthy.
A full picture of long COVID is still being drawn.
Generally, someone is considered to have long COVID if they
experience symptoms lasting longer than four weeks after their
initial infection. Symptoms can include: persistent fatigue,
brain fog, headache, loss of smell and taste, dizziness,
shortness of breath, fever, depression, and anxiety.
In more severe cases, the function of critical organs like
the heart and lungs can be affected. We have heard directly
from ``long-haulers'' that the continuation of their symptoms,
as well as management of their care can be more of a battle
than the initial onset of the virus--both physically and
mentally.
Early studies of long COVID are small in scale but raise
alarming trends. One study of about 4,000 participants found
that nearly 15 percent of COVID-19 patients develop long COVID.
The study also suggested that people with multiple symptoms
during their initial infection, women, and older individuals
are more susceptible to long COVID. Another recent study in
Sweden found that long COVID is prevalent among healthcare
workers. It found that one in 10 young, healthy adults, who
initially had mild COVID symptoms, continued to struggle with
moderate to severe symptoms months later.
Our goal in this hearing is to learn more about long COVID
and what is being done to address it.
On our first panel, we will hear from leaders of two of the
world's leading public health agencies, the National Institutes
of Health and the Centers for Disease Control and Prevention.
Both agencies are actively monitoring long COVID and are in the
process of expanding their research. I look forward to hearing
from our public health experts on that panel.
Our second panel will include professionals on the ground
who are treating and researching long COVID. These doctors are
actively working to seek out answers to many of our questions.
And we will be joined by patients who will share their own
stories about the impacts that long COVID is having on their
lives. It's important that we hear directly from patients as we
take a close look at what's needed to make certain they and the
many other Americans with long COVID can reach a full recovery.
So even if a small fraction of COVID-19 patients develops
long COVID, hundreds of thousands, if not millions, of people
will require ongoing, interdisciplinary care and may not be
able to maintain their quality of life or their gainful
employment. So we think it is our responsibility to ensure that
we learn more about long COVID, to prevent it when possible,
and to help patients inflicted receive the proper treatment.
I hope this hearing will help us better understand not only
how Congress can help support further research but also how
best to help those who suffer from long COVID moving forward.
Thank you, and I yield back.
Ms. Eshoo. The gentleman yields back.
The Chair now recognizes the ranking member of the full
committee, Representative Cathy McMorris Rodgers, for her
opening statement.
OPENING STATEMENT OF HON. CATHY McMORRIS RODGERS, A
REPRESENTATIVE IN CONGRESS FROM THE STATE OF WASHINGTON
Mrs. Rodgers. Thank you, Madam Chair. And thank you to our
witnesses for participating and sharing your expertise today.
The long-term effects of COVID-19 that some patients are
experiencing is incredibly concerning. As others have stated,
many patients have reported long-hauler symptoms like fatigue,
brain fog, heart irregularities, chest pain, shortness of
breath, impaired memory. Some have even experienced mental
illness such as psychosis.
A University of Washington study found that nearly one-
third of COVID-19 patients have reported symptoms that can
persist for several months. This alarming statistic highlights
the sheer scale of the potential next wave of the pandemic. We
must have a better understanding about the causes and treatment
for long-term COVID-19 symptoms.
I am grateful that because of the success of Operation Warp
Speed and the historic public-private partnerships, America has
led to develop safe and effective vaccines that are key to
beating this pandemic and restoring our way of life. The COVID-
19 vaccines and getting them in the arms of every American who
wants them are vital for prevention and stopping people from
becoming long-haulers in the first place.
The Seattle Times recently shared Joe's story in my
district. He was infected with COVID-19 last year and has a
preexisting lung disease that subsided with treatment.
Inflammation from the virus devastated his lungs, brought his
underlying condition back, and caused irreversible damage. He
said, quote, ``I went from being able to walk a mile quite
easily to barely being able to walk to the restroom with
oxygen.'' Now, a lung transplant is his only option.
Unfortunately, there is no diagnostic mechanism for long
COVID and there are limited treatment options. While there are
still outstanding questions about this phenomenon, health
providers and researchers across the country, including many in
my State of Washington, are working hard to investigate this
poorly understood condition.
Researchers at Seattle's Institute for Systems Biology are
collaborating with local healthcare providers to study and
detect viral fragments of infection through blood tests. The
purpose of this study is to learn more about the virus, how the
body fights it, and the impact of infection on different
organs.
Other experts in my State are part of the INSPIRE study,
which is a national collaboration conducting applied research
to investigate the long-term outcomes of COVID-19.
I am encouraged by this American leadership and ingenuity.
And I am hopeful that medical experts will soon be able to
deliver hope to patients who so desperately need it.
COVID-19 has had devastating impacts on so many lives,
Americans all across this country. As we safely and responsibly
reopen and get a vaccine to every American who wants one, we
cannot lose sight of the toll COVID-19 has on long-hauler
patients. As we work to crush this pandemic, these patients
deserve answers and the best care possible.
I look forward to learning more today about what needs to
be done to help provide relief for patients experiencing these
symptoms.
Thank you, and I yield back.
[The prepared statement of Mrs. Rodgers follows:]
Prepared Statement of Hon. Cathy McMorris Rodgers
Thank you, Madam Chair, and thank you to our witnesses for
participating and sharing your expertise today.
LONG-HAULERS
The long-term effects of COVID-19 that some patients are
experiencing is incredibly concerning.
Many patients have reported ``long-hauler'' symptoms like
Fatigue
Brain fog
Heart palpitations and chest pains
Shortness of breath and
Impaired memory
Some have even experienced mental illness, such as
psychosis.
A University of Washington study found that nearly one-
third of COVID-19 patients have reported symptoms that can
persist for several months.
This alarming statistic highlights the sheer scale of the
potential next wave of this pandemic.
We must have a better understanding about the causes and
treatment for long-term COVID-19 symptoms.
I'm grateful that because of the success of Operation Warp
Speed and the historic public-private partnerships ...
... America led to develop safe and effective vaccines that
are key to beating this pandemic and restoring our way of life.
The COVID-19 vaccines--and getting them in the arms of
every American who wants them--are vital for prevention and
stopping people from become long-haulers in the first place.
JOE'S STORY
The Seattle Times recently shared Joe's story in my
district.
He was infected with COVID-19 last year and has a pre-
existing lung disease that subsided with treatment.
Inflammation from the virus devastated his lungs, brought
his underlying condition back, and caused irreversible damage.
He said, ``I went from being able to walk a mile quite
easily, to barely being able to walk to the restroom with
oxygen.''
Now, a lung transplant is his only option.
Unfortunately, there is no diagnostic mechanism for long
COVID and there are limited treatment options.
While there are still outstanding questions about this
phenomenon, health providers and researchers across the country
...
... including, many in my State of Washington.
... are working hard to investigate this poorly understood
condition.
WASHINGTON
Researchers at Seattle's Institute for Systems Biology are
collaborating with local healthcare providers to study and
detect viral fragments of infection through blood tests.
The purpose of the study is to learn more about the virus,
how the body fights it, and the impact of infection on
different organs.
Other experts in my State are part of the INSPIRE study,
which is a national collaboration conducting applied research
to investigate the long-term outcomes of COVID-19.
I am encouraged by this American leadership and ingenuity,
and I am hopeful that medical experts will soon be able to
deliver hope to patients who so desperately need it.
CONCLUSION
COVID-19 has had a devastating impact on the lives of so
many Americans.
As we safely and responsibly reopen and get a vaccine to
every American who wants one ...
... we cannot lose sight of the toll COVID-19 has on long-
hauler patients.
As we work to crush this pandemic, these patients deserve
answers and the best care possible.
I am looking to learning more today about what needs to be
done to help provide relief for patients experiencing these
debilitating symptoms.
Thank you and I yield back.
Ms. Eshoo. The gentlewoman yields back.
The Chair would like to remind Members that, pursuant to
committee rules, all Members' written opening statements will
be made part of the record.
I now would like to introduce our witnesses for our first
panel, a distinguished panel. First--he doesn't need any
introduction to us, I don't think to the American people,
because his name is synonymous with hope--from the National
Institutes of Health, Dr. Francis Collins. He is the Director
of the NIH.
We welcome you back to the committee, Dr. Collins, and we
are very grateful to you for being with us today.
We are also joined by Dr. John T. Brooks. He is the chief
medical officer of the CDC COVID-19 Response.
Welcome, Dr. Brooks, and thank you for joining us.
So, Dr. Collins, you have--you are recognized for your
statement. And, again, thank you for the extraordinary work
that has taken place at the NIH, especially over this last year
that has been so challenging for everyone. And we are very
anxious to hear from you because this is an issue that is
having great impact, taking a toll on our fellow Americans. And
we know that you are going to help guide us with producing an
answer. So welcome again to the subcommittee. You are now
recognized.
STATEMENTS OF FRANCIS S. COLLINS, M.D., DIRECTOR, NATIONAL
INSTITUTES OF HEALTH, DEPARTMENT OF HEALTH AND HUMAN SERVICES,
AND JOHN T. BROOKS, M.D., CHIEF MEDICAL OFFICER, CDC COVID-19
RESPONSE, CENTERS FOR DISEASE CONTROL AND PREVENTION,
DEPARTMENT OF HEALTH AND HUMAN SERVICES
STATEMENT OF FRANCIS S. COLLINS, M.D.
Dr. Collins. Well, thank you.
Good morning, Chair Eshoo and Ranking Member Guthrie, full
committee Chair Pallone and Ranking Member McMorris Rodgers,
and distinguished subcommittee members. I don't know that I can
recall being at a hearing with this much interest and this many
Members attending in a long time.
Thank you all for your sustained commitment to the National
Institutes of Health, the NIH. I am really grateful for this
opportunity to discuss how NIH research is addressing this
major public health concern commonly known as long COVID.
We have heard troubling stories--all of us have--of people
who are still suffering months after they first came down with
COVID-19, some of whom initially had very few symptoms or even
none at all. And yet today, these folks are coping with a long
list of persistent problems affecting many different parts of
the body: fatigue, brain fog, disturbed sleep, shortness of
breath, palpitations, persistent loss of taste and smell,
muscle and joint pain, depression, and many more.
Late last year, we began to talk with congressional
leaders, including many of you, about the substantial research
needed both to understand long COVID and to discover ways of
treating and preventing it. You immediately grasped the
importance of this issue, appropriating more than $1 billion
for this work in December. Since then, we have pulled together
experts from many scientific fields to design a fast, flexible
research initiative. In a moment, I will walk you through our
plans. But, first, I would like to speak directly to the
patient community.
Some of you have been suffering for more than a year with
no answers, no treatment options, not even a forecast of what
your future may hold. Some of you have even faced skepticism
about whether your symptoms are real. I want to assure you that
we at NIH hear you and believe you. If you hear nothing else
today, hear that we are working to get answers that will lead
to ways to relieve your suffering.
Now on to our research plans. We need to start by
understanding the basics. New data arrive every day, but
preliminary reports suggest that somewhere between 10 to 30
percent of people infected with SARS-CoV-2 may develop longer-
term health issues.
To get a solid measure of the prevalence, severity, and
persistence of long COVID, we really need to study tens of
thousands of patients. And these folks should be diverse, not
just in terms of the severity of their symptoms and type of
treatment received, but in age, sex, race, and ethnicity. To do
this rapidly, we are launching an unprecedented metacohort.
What is that? Well, an important part of this can be built
on existing longitudinal community-based cohorts or also the
electronic health records of large healthcare systems. These
resources already include tens of thousands of participants who
have already contributed years worth of medical data. Many of
them will by now suffer from long COVID.
This approach will enable us to hit the ground running,
giving researchers access to existing data that can quickly
provide valuable insights on who might be most at risk, how
frequently individual symptoms occur, and how long they last.
Individuals suffering with long COVID, including those from
patient-led collaborative groups, will be invited to take part
in intensive investigation of different organ systems to
understand the biology of those symptoms. Our goal is to
identify promising therapies and then test them in these
volunteers.
We also want to learn from following cohorts of patients
with COVID who were enrolled in therapeutic trials for their
acute illness. Do they get long COVID? Does the therapeutic
they were given change that outcome? They are already being
meticulously monitored, with researchers recording clinical
data and, in many cases, participants providing detailed
observations about their own health status.
Finally, we need a cohort for children and adolescents.
That is because kids can also suffer from long COVID. And we
need to learn more about how that affects their development.
We have already had 273 responses to our call for research
proposals. And we expect to make awards in the next 3 weeks.
Intensive laboratory and imaging studies should be underway by
summer. Patients will have an active role at every level and
stage of this research. As we recruit volunteers, we will ask
them to share their health information real-time with mobile
health apps and wearable devices.
Long COVID and the people living with it can no longer be a
hidden toll of the pandemic. We must bring them to the
forefront of our fight against COVID-19 and pursue with all the
energy that we can muster the answers and the interventions
that will help them.
In closing, I would like to emphasize that one critical way
to prevent long COVID is to prevent COVID itself. Even for
young people who consider their risk of severe COVID to be low,
the long-term consequences can be quite serious. So long COVID
represents one more reason to encourage everyone age 16 and
over to get vaccinated as quickly as possible.
Thank you, and I look forward to your questions.
[The prepared statement of Dr. Collins follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you, Dr. Collins, for your excellent
opening statement. And I know that Members are anxious to field
their questions to you, but you gave us a great overview.
The Chair now recognizes Dr. Collins for--Dr. Brooks, I am
sorry--for 5 minutes.
STATEMENT OF JOHN T. BROOKS, M.D.
Dr. Brooks. Thank you.
And good morning, Chairwoman Eshoo and Ranking Member
Guthrie and all the committee members, for the invitation to
talk with you today.
Over the last year, I have had the honor of serving as
chief medical officer for CDC's COVID-19 Response. But before I
begin, I want to take a moment today to just recognize the
nearly 570,000 American lives lost to this virus. I also want
to recognize the tens of millions of Americans who have
survived COVID-19 but now face serious challenges and
uncertainty with post-COVID conditions which are real and
concerning.
You are why we are here today. I and my colleagues have
heard you. I am here today with others to share what we know
about what it is that you are experiencing, because we are
committed to helping you.
As a physician myself, I also know how challenging and
worrisome these conditions are to the healthcare providers
across our Nation who are seeing more and more patients in
clinic with ongoing challenges after COVID infection.
I am also grateful for this opportunity to discuss the
impact of these conditions and to review CDC's efforts to study
them, measure their prevalence and severity, identify persons
at increased risk, and develop recommendations for their
prevention and treatment.
Although standardized case definitions are still being
developed, CDC uses the umbrella term ``post-COVID conditions''
to describe health issues that persist for more than 4 weeks
after a person is first infected with SARS-CoV-2, the virus
that causes COVID-19. Based on our studies to date, CDC has
distinguished three general types or categories of post-COVID
conditions, although I want to caution that the names and
classifications may change as we learn more.
The first, called long COVID, involves a range of symptoms
that can last for months. The second comprises long-term damage
to one or more body systems or an organ. And the third consists
of complications from prolonged treatment or hospitalization.
As in all of our work, CDC is committed to addressing post-
COVID conditions through a lens of health equity. While we
don't yet have clear data on the impact of post-COVID
conditions on racial and ethnic minority populations and
underresourced communities, we are working to enhance the
collection of demographic data to inform our knowledge base and
resulting guidance.
As these groups are both more likely to acquire infection
and less likely to be able to access healthcare services, we
believe they are disproportionately affected by these
conditions.
As early as the spring of 2020, CDC initiated studies to
understand the nature of these emerging conditions that follow
recovery from infection and to assess their contribution to the
burden of disease among survivors. Among these efforts are
prospective studies that will follow cohorts of patients for up
to 2 years to provide information on the proportion of people
who develop post-COVID conditions and assess risk factors for
their development.
CDC is also working with multiple partners to conduct
online surveys about long-term symptoms and using multiple
deidentified electronic health record databases to examine
healthcare utilization of patient populations after initial
infection. The collection of these data informs our
understanding how often post-COVID conditions develop and how
long they may be expected to last.
CDC is also working on interim evidence-based guidance,
conducting calls to raise awareness among clinicians and
educate them and publishing studies with data for action, with
a focus on equipping primary care providers with information on
diagnosis and management to the extent that is presently
available. We regularly solicit feedback from these national
clinical organizations to ensure this guidance is informative
and up to date.
CDC is also working to identify potential long-term
surveillance possibilities, including leveraging existing
systems and research.
In closing, CDC is committed to working hand-in-hand with
NIH, research partners, healthcare providers, and the affected
patients and their advocates across all levels of government to
advance the science around post-COVID conditions to more fully
understand these conditions and ultimately help the people
experiencing them. We will continue to provide guidance on
post-COVID conditions that is rooted in science, maintaining
transparency about what we know and also what we do not know,
and updating our guidance as evidence evolves. And we will keep
health equity at the forefront of our efforts to address post-
COVID conditions.
While a lot of work has already begun to address post-COVID
conditions, we know there is much left to do to create the
evidence base needed to help people suffering with these
conditions. I really look forward to working together towards
that end.
Thank you again for the invitation to testify today, and I
welcome your questions.
[The prepared statement of Dr. Brooks follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you very much, Dr. Brooks. And we are so
pleased to have you with us today as a witness.
We are now going to move to Member questions. And I
recognize myself for 5 minutes to do so.
To Dr. Collins and Dr. Brooks: The Biden administration has
developed a really wide-ranging, whole-of-government response
to the acute impacts of COVID-19, including the formation of
the White House COVID Response Team, the COVID Health Equity
Task Force, but I don't think there has yet been a similarly
public coordinated and comprehensive effort to address, you
know, this multifaceted issue that we are having the hearing on
today. Because it is--as you both noted, it is a crisis for
patients, has an effect on our healthcare system, and there are
so many issues that are attached to this.
What I would like to know is, who is in charge of leading
this effort? In listening to your testimonies, you are both in
the same lane. But is there one person or one outfit or one
task force in charge of this? Maybe it is a yes-or-no answer, I
don't know.
Dr. Collins. It is a very appropriate question. I think we
have excellent relationships between NIH and CDC. Dr. Brooks
works intensively with Dr. Lerner and my staff. We are working
with FDA also in this space and also with CMS. But you are
right, there is no sort of supervisory, top-level oversight
like there is----
Ms. Eshoo. Do you think, Dr. Collins, we need one?
Dr. Collins. You know, I have to think hard about it,
because sometimes----
Ms. Eshoo. OK.
Dr. Collins [continuing]. It can be a good thing or
sometimes it can kind of get in the way of a more organic
approach.
Dr. Brooks, go ahead.
Dr. Brooks. Yes. I just wanted to add that I would say
that, first of all, we are collaborating intensively. And this
is sort of standard for how we often address these emerging
problems, you know, that we work hand-in-hand very closely on
both the natural history and epidemiology side, together with
the clinical side, because both are needed for a coordinated
response. And we have regular calls with NIH.
At this time, you know, we would have to think about
whether a coordinating body is necessary. I think we are
working very well right now together.
We also--you had asked about sort of other government
engagement. I just would say a couple of things to that. While
we are in the preliminary phases of really beginning to define
what this is, it may be some time before we have a lot to bring
to some of these other groups, particularly groups like HRSA to
trot this out.
I will say, though, we have already been in touch with CMS
about case definitions as well as the Social Security
Administration.
Ms. Eshoo. OK. Well, Dr. Collins--well, thank you, Dr.
Brooks, for that.
I think that there are a lot--we have patients with us
today. And thank you, Dr. Collins, for in your opening, in your
testimony, you spoke directly to patients across the country.
Now, you also spoke about metacohort undertakings. When do
you expect that to conclude? How long is that going to take?
And in the meantime, what can NIH, CDC, FDA, the
administration, the Congress, what do we tell our constituents
that are undergoing what is attached to this condition?
Dr. Collins. So the timetable we are moving forward with is
pretty unprecedented for such a large-scale study, but it needs
to be. The funding you all provided was made available in
December. By February, we put out a notice to all of the
organizations and academic centers and other entities that we
thought could help with this. And we got a response of that 273
applications that are currently going through an intense
review. We aim to make those awards within the next 3 weeks and
to stand up this metacohort in a series of core facilities so
that we can immediately begin the process of collecting the
data. And doing a deeper dive into trying to understand really
what is the mechanism that is causing this illness.
And one thing, I guess, we will be depending on the patient
groups is participation in those research studies. And I think
I am hearing a lot of motivation for that, so I think we are
going to have wonderful partnerships. And we want them at the
table for every decision we make. This is not supposed to be a
top-down, but more of a bottom-up effort to get answers----
Ms. Eshoo. Thank you very much. Oh, I think my time has
been used.
And so the Chair will now recognize Mr. Guthrie, the
ranking member of our subcommittee. You are recognized for your
5 minutes of questions.
Mr. Guthrie. Thanks, Chair Eshoo. And thanks to our
witnesses here today.
And, Dr. Collins, first off, I heard your message a few
Sundays ago on ``CBS Sunday Morning,'' and in here, and all
times I have dealt with you. And, Dr. Brooks, I haven't dealt
with you as much, so I am sure this is appropriate as well.
But, you know, the tone in which you speak about testing is
important. We have a lot of information, but we don't need to
come off like we think we are smarter than everybody else, even
though we have more information than people have. And so as we
share that, I think the way we speak to people is how they
listen to us. And I think your tone on that message you put on
that Sunday morning about being vaccinated was just absolutely
the right way we need to speak to people. So thank you for
that.
Speaking of vaccinations, Dr. Collins, I have heard through
anecdotal reports that people who have long-term COVID are
experiencing improvement after they are vaccinated in their
conditions. Can you speak more to this, and what do you think
is causing this reaction?
Dr. Collins. It is a great question. There have been
anecdotal reports of people who suffered for months sometimes
with long COVID, and after getting the COVID vaccine
[inaudible]--a bit of a background there. Well, I guess I will
just keep talking --have reported benefit, in some instances,
fairly dramatic benefit within a few days.
It is hard to get really good data. The largest study that
has actually been published in a preprint was only 44
individuals who had in fact had long COVID, got vaccinated, and
there was overall a tendency towards improvement. Something
like 23 percent of them said they were better after a month,
whereas those who didn't get the vaccine, it was 15 percent. So
it is a small difference. We need to understand that.
One of the questions is, how would that work anyway? Does
that say that there is still lingering infection by the SARS-
CoV-2 virus in people with long COVID? Even though we have not
been able to recover the virus from those folks, does the
vaccine giving this response say that there is some sort of
reservoir there? That is a clue. So it is one of the more
interesting things that has come along recently. It might be a
possible way to go forward.
This is one of the reasons we really need to have this much
larger-scale metacohort to try to get an answer to whether this
is a real signal or not. So we are all over it.
Mr. Guthrie. Well, thank you very much. That is great to
hear.
And, Dr. Brooks, a recent study of COVID patients found
that nearly 13 percent received their COVID-19 diagnosis for
the first time were presenting with long-COVID symptoms.
Presumably, these people first had COVID either when testing
was not prevalent or had asymptomatic or mild cases.
How can we diagnose more of these long-COVID cases earlier?
And is there a role for serology testing? And what other
diagnostics are needed to better identify long COVID?
Dr. Brooks. Thank you very much for asking that question.
You raise a really important point, which is, not only are
there persons who develop post-COVID symptoms who we later
through serology or testing recognize as having had COVID, but
there are also people who develop these post-COVID conditions
who have no record of testing and we can't determine if they
had COVID. So we have got to think carefully about what that--
how to manage that when we are coming up with a definition for
what a post-COVID condition is.
But more to the point of your question, the most important
thing as I think was first laid out is to just get vaccinated
and avoid getting the infection in the first place. If,
however, you experience the infection and develop post-COVID
conditions, one of the most important things is to make sure
that this condition is recognized. We need to make sure that
folks know what they are looking at.
As you have heard, it is sort of protean, there are all
sorts of different ways, and maybe we will talk about this
later, but the symptoms and ways that people present are very
varied. And people need to be thinking, could this be post-
COVID, and also taking patients at their word. You know, we
have heard many times that patients have been ignored or their
symptoms minimized, possibly because they didn't recognize they
had COVID previously.
Mr. Guthrie. OK. Thank you.
And then, Dr. Collins, how is NIH leveraging existing
longitudinal community-based cohorts such as the All of Us
Study to examine and study long COVID? And what more can be
done to study these individuals?
Dr. Collins. That is a great question. All of Us, you may
know, is this large-scale study, very diverse in those who have
enrolled in it, aiming to have a million Americans that we can
follow over time for all kinds of questions that could be asked
at length about how to prevent illness or how to manage chronic
disease.
We are already up to over 300,000 participants. I think
some of you are participants. Thank you, if you are. And this
is a golden opportunity because these are individuals who have
consented to be part of research. They are enthusiastic about
it. They are our partners. And with 300,000-plus of them, there
have been lots of people who have had COVID and quite a few who
are now suffering from long COVID. And we have this historical
information about them prior to their being exposed to this
virus. So we can really look at the sweep of their experience
and perhaps identify what were the predisposing factors that
caused those people who get the acute illness to go on to long
COVID and not just get better the way most respiratory viruses
ought to do.
So that is part of our metacohort, a very exciting part or
our metacohort. We are going to build on that as well by
enrolling other folks with other backgrounds, but I am glad you
raised that one.
Mr. Guthrie. Thank you very much.
And thanks, Chair. I yield back.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the chairman of the full
committee, Mr. Pallone, for his 5 minutes of questions.
Mr. Pallone. Thank you, Madam Chair.
And let me say how pleased I am to have Dr. Collins and Dr.
Brooks here today to discuss the long-COVID issue.
I think that you have touched a little bit on some of my
questions, so maybe we can just ask you to develop some more
details.
Let me start with Dr. Brooks. I know you touched upon the
strides that the CDC has been making in addressing the pandemic
in the short and long term, and you talked about the incidence
and prevalence of long COVID so far. But just share with me a
little more details about what you have been able to understand
about the incidence and prevalence of long COVID so far, if you
will.
He may be on mute. Maybe I am on mute.
Dr. Brooks. My apologies. My Christmas card is going to be
``I am on mute.''
OK. Thank you. I am happy to share with you what we know
about this. As I mentioned, we have been doing some cohort
studies since early last spring. These and some of our analyses
of electronic health records have given us some insight into
the potential incidence of post-COVID conditions. That together
with also external research that others have cited already lead
us to believe that, one, it is common. It could be as common as
two out of every three patients.
A study we recently published in our flagship journal, the
Morbidity and Mortality Weekly Report, suggested two out of
three patients made a clinical visit within 1 to 6 months after
their COVID diagnosis. So that is unprecedented. People who
recover from the flu or a cold don't typically make a scheduled
visit a month later. It does seem that for some people the
condition gets better, but there are definitely a substantial
fraction of persons in whom this is going on for months.
The value of the study that Dr. Collins spoke to is that
with the large numbers it will really help us hone in more
closely on what the precise numbers look like.
Mr. Pallone. Well, thank you. And I know you, both of you,
have mentioned this metacohort study, which maybe you can
explain what metacohort means, and then, you know, how that is
going to help us get a more reliable measure of how widespread
this long COVID might be, Dr. Collins.
Dr. Collins. Yes. Let me give a try at that. Yes, maybe
that is not such a familiar word. Even for people who do
epidemiology, we haven't had a lot of metacohorts, so let me
explain.
Basically, what we did was to think of all of the ways in
which we could try to get answers to this condition by studying
people, both those who already have self-identified as having
long COVID as well as people who just went through the
experience of having the acute illness, to see what is the
frequency with which they ended up with these persistent
symptoms. And if you look around sort of what would be the
places where you would find such large-scale studies, one would
be, like we were just talking about a minute ago with Mr.
Guthrie, the idea of these long-standing cohort studies,
Framingham being another one, where you have lots of people who
have been followed for a long time, see if you can learn from
them who got long COVID and what might have been a predisposing
factor. That is part of the metacohort.
You could also look at people who have been in our
treatment trials, because there are thousands of them that have
enrolled in these clinical trials, and they got a particular
treatment applied, like a monoclonal antibody, for instance. It
would be really interesting to see if that had an effect on how
many people ended up with long COVID. Did you prevent it if you
treated somebody acutely with a monoclonal antibody?
And then there are all these patient support groups, and
you will be hearing more from them in the second panel, were
highly motivated, already have collected a lot of data
themselves as citizen scientists. We want to tap into that
experience and that wise advice about how to design and go
through the appropriate testing of all this.
So you put those all together and that is a metacohort,
where you have different kinds of populations that are all put
together in a highly organized way, with a shared database and
a shared set of common data elements, so we can learn as
quickly as possible. Theoretically, we can just do one of
those, but this is such an urgent crisis, and you the Congress
have given us enough resources. We are trying to do all of them
but in a seamless, integrated, synergistic way.
Mr. Pallone. Thank you.
Could you just quickly, Dr. Brooks, tell us about how CDC
is planning to keep providers informed on how to diagnose and
treat patients with long COVID? There is only like 20 seconds
left, if you could quickly.
Dr. Brooks. Yes. First, we do webinars and regular calls,
updating them on what we know, publishing interim guidance that
we regularly update. And that guidance is informed, not only by
clinical providers, but also by patient groups with whom we
share the information.
Mr. Pallone. All right. Thanks a lot.
Thank you, Madam Chair.
Ms. Eshoo. The chairman yields back.
And the Chair now recognizes the ranking member of the full
committee, Congresswoman Cathy McMorris Rodgers, for her 5
minutes of questions.
Mrs. Rodgers. Thank you, Madam Chair. Thank you. Thank you,
everyone.
I wanted to start with a question to Dr. Collins. And
really appreciate both Dr. Collins and Dr. Brooks being with us
today. This is extremely helpful. I wanted to take a moment
just to ask a question about a letter that Congressman Morgan
Griffith and Congressman Brett Guthrie and I had sent to NIH
back in March, March 18, that was really about understanding
the origins of the pandemic. And I understand that NIH is
working on a response. And I want to thank you for your
attention.
The question is, do you believe that it is in the public
interest to have a comprehensive, scientific investigation into
the pandemic origins? And do you agree with the Director-
General of the World Health Organization that further
investigation into COVID origins is needed, including reviewing
possible links to the potential laboratory leak?
Dr. Collins. Yes, I do believe that an investigation
following on the original WHO investigation is needed. You may
have seen The Wall Street Journal report just yesterday
indicating that there is a serious effort now within the U.S.
Government, between the State Department, the Department of
Health and Human Services, the Department of Agriculture, and
five other Federal agencies to put forward to WHO what we
believe ought to be the components of such a followup
investigation. It should be science based. It should be looking
at evidence. It should be rigorous. It should try to get
answers to the questions that the first investigation was not
able to derive. And NIH will undoubtedly play some role in
that, although it obviously is occurring at the Department
level.
So yes. To answer your question directly, we do believe
that a followup investigation is appropriate. And we are
working on answers to your letter with 29 questions and 40
footnotes and 11 pages. It is taking us a little longer than a
few days.
Mrs. Rodgers. Yes, I understand that. It is very
comprehensive. I appreciate your attention to those questions.
I also wanted to ask about children. And I think we are
learning that children are better protected from some of the
most severe symptoms of COVID-19. However, it is becoming
increasingly apparent that some children who have contracted
COVID-19 are having long-term effects. And would you just speak
to what we know about long COVID in children? And can you tell
us about the special cohort that the NIH is developing for
children and adolescents?
Dr. Collins. Yes. And I really appreciate that question,
because this is another critical part of the metacohort that I
failed to mention a minute ago and should have.
We do know that children can get long COVID. In fact, the
harder you look, it seems, at least in the study that I think
that has done the most thorough job so far, that somewhere
around 11 to 15 percent of kids who have had the COVID
infection, and they are not immune to it, can end up with this
long-term consequence, which can be pretty devastating in terms
of things like school performance. So we need to understand
that as well.
Just to clarify: There is a separate problem that children
who have had COVID-19 can have, which is something called MIS-
C, multisystem inflammatory syndrome of children, which is an
autoimmune, a rather dramatic condition which can put kids in
the ICU, which we do know how to treat. And that is a critical
one as well, but I think it is a different pathogenesis than
the long COVID.
The long COVID cases look kind of like the adult cases,
except they are in younger individuals. So as part of studying
this we need to include children in a very significant way and
collect all the data that we can and try to understand the
cause.
Mrs. Rodgers. Thank you very much. And I appreciate your
attention to that.
Dr. Brooks, you say that COVID infection is not unique in
terms of causing both an acute illness followed by longer-term
conditions and that some post-COVID conditions may be similar
to those in other diseases. Would you just speak to what post-
COVID conditions are similar to those seen in other infectious
diseases? And can we learn anything from those diseases that
would help our understanding of long COVID?
Dr. Brooks. Yes, happy to. So I think the complications
that are seen in the post-COVID conditions to which the
parallel is often most rapidly drawn is to myalgic
encephalitis, or chronic fatigue syndrome. Let me be very
cautious there and say that that is usually--we often jump to
framing something, when it is new, to frame it with something
we already know. And I want to stress that we now also know
that what we are seeing with post-COVID differs from that set
of conditions.
What it shares in common, particularly in people who have
this for months, are extreme fatigue. I mean fatigue, as you
probably heard, so bad you can't get out of bed, it makes it
impossible for you to work and limits your social life. Anxiety
and depression lingering, chronic difficulty breathing, with
either cough or shortness of breath. The loss of smell persists
for a very long time, which, incidentally, is particularly
unique to this infection, the best I know.
What I would like to stress is that what we are doing now
to understand post-COVID conditions may well have benefits for
other conditions like it. It is a leading hypothesis, I think,
that myalgic encephalitis is caused by an infectious disease
insult, but we don't really know the timing and how it occurs.
The cohorts that Dr. Collins described, where we are
following people in real time already and that we can see them
when they get COVID and follow them forward, we have a unique
opportunity to really begin to understand what the interplay
may be between this insult, if you will, from an infection and
how that results in these conditions later. And then use that
to identify people at risk, predict who may get it, and better
understand how to treat it.
Mrs. Rodgers. Super. Thank you very much. Thank you both.
I yield back.
Ms. Eshoo. The gentlewoman yields back.
It is a pleasure to recognize the gentleman from North
Carolina, Mr. Butterfield, for your 5 minutes of questions.
Mr. Butterfield. Thank you very much, Madam Chair. And good
to see all of you today and hope you are doing well.
Let me first start with Dr. Brooks. Dr. Brooks, thank you
for your testimony. The evidence from the past year clearly
shows that COVID is disproportionately harming African
Americans, Latinos, and Native communities. In your testimony,
you note that because of the higher rate of COVID cases in
these communities, it is likely that these communities will
also experience post-COVID conditions at a higher rate.
And so my question is, data can be a powerful tool. Is the
CDC tracking race and ethnicity in its long-term studies, long-
term studies that have worked utilizing data from electronic
health records and online surveys? And if not, let me ask you,
why? And how can those challenges be fixed?
Dr. Brooks. Well, thank you for raising that question. I
think this may be a short answer, which is, absolutely, we are
following race, ethnicity, as well as often income, educational
attainment, and other social determinants of health in the
studies that we are doing related to COVID.
I would like to point out that one of the cohort studies we
are doing is particularly focused on American Indians and
Alaska Natives. Others are oversampling racial or ethnic
minority populations or those who are underresourced to ensure
that we get information about these communities.
One point I would like to make is electronic health records
can be a little tricky, because it depends on what the
clinician entered as the race or ethnicity. And in some of our
studies, we have the opportunity to ask people themselves, tell
us how you want us to represent you in this study. And it is
nice when we are able do that.
Mr. Butterfield. Thank you. Thank you for that response.
And now I will go to my good friend Dr. Collins. It is good
to see you, Dr. Collins. And thank you for your incredible
work.
In your testimony, Dr. Collins, you describe taking
advantage of existing cohort and clinical studies to create a
megacohort to compare post-COVID conditions data. You note that
for this effort to be effective, the data must be standardized.
My question is about standardization. Can you explain how
the NIH is planning to address the standardization issue and
whether you see any other barriers that would prevent
megacohort data from being used effectively?
Dr. Collins. That is a great question, Congressman. Yes, it
is both a metacohort and, as you have said, it is a megacohort
as well. We can use the T or the G and they would both be
correct.
So the idea of trying to assemble such a large-scale effort
from multiple different kinds of populations of patients is our
idea about how to do this quickly and as vigorously and
accurately as possible. But it won't work if we can't actually
compare across studies and figure out what we are looking at.
So part of this is the ability to define what we call
common data elements, where the individuals who are going to be
enrolled in these trials from various sources have the same
data collected, using the same format, so that you can actually
say if somebody had shortness of breath, how did you define
that? If somebody had some abnormality in a lab test, what were
the units of the lab test that everybody will agree so you can
do apples-to-apples comparisons? That is already underway.
Part of this metacohort is also to have three core
facilities. One of those is a clinical sciences core, which
will basically come up with what are the clinical measures that
we want to be sure we do accurately on everybody who is
available for those to be done.
Another is a data sciences core, which will work
intensively on these common data elements and how to build a
data set that is both preserving the privacy and
confidentiality of the participants, because these are people
who are human subject participants in a trial, and also making
sure that researchers have access to information that they can
quickly learn from.
Then there is a third core, which is a bio repository,
where we are going to be obtaining blood samples and other
kinds of samples, and we want to be sure those are accurately
and safely stored so they can be utilized for follow-up
research. All of that has to fold into this.
And so I am glad you asked the question. That is the
mechanism by which we aim to make the whole greater than the
sum of the parts here. Even though the parts are pretty
impressive, the whole is going it to be pretty amazing.
Mr. Butterfield. Thank you. Thank you very much, Dr.
Collins. And we are going to continue to support your work on
this committee. And, again, thank you. And thank you to all of
your colleagues at the agency. You are doing incredible work.
And let's hope the President tonight will also recognize your
great work. Thank you.
I yield back.
Ms. Eshoo. I think he recognized Dr. Collins' great work
because he was one of the first individuals that he called and
said, ``We need you to stay.'' So thank you.
The gentleman yields back.
A pleasure to recognize a former chairman of the full
committee, a great friend to all of us, Mr. Upton from
Michigan.
Mr. Upton. Well, thanks, Madam Chair. It is a little bit of
a cold, rainy day back here in Michigan, but I am delighted to
be here with all of you, and certainly my very good friend Dr.
Collins, a University of Michigan former professor before he
moved forward and has done great work. And I have got a Bo
Shembechler bobblehead right behind me if you look carefully.
But let me just--I want to focus on a couple of things with
you as we move forward. You know, you and I talked a lot last
year about the RADx program, which was part of the first COVID
package that we adopted on a very strong bipartisan vote, over
400 votes. It speeds up the innovation and the development to
commercialization and implementation of testing for COVID.
So what has NIH learned literally in a year since the
launch of that program where you put it together, I want to
say, over a weekend. But what did you learn that can help us as
we move forward, particularly as we have now made real progress
with the vaccines, but we have a long way to go still in the
years ahead?
Dr. Collins. Well, thank you for that question, and, yes,
for your support of RADx. Yes, it is interesting you ask the
question, because tomorrow is the 1-year anniversary of the
launch of RADx, Rapid Acceleration and Diagnostics, another
program made possible by the Congress by providing us with some
additional funds to be able to build new platforms for
technology to detect the presence of that SARS-CoV-2 virus,
increasingly being able to do those now as point of care
instead of having to send your sample off to a central
laboratory and even now doing home testing, which has now just
in the last month or so become a reality, and that is RADx that
developed those platforms.
It was a pretty amazing experience, actually. We basically
built what we called a shark tank. We became venture
capitalists. And we invited all of those people who had really
interesting technology ideas to bring them forward. And the
ones that looked most promising got into the shark tank and got
checked out by business people, engineers, various other kinds
of technology experts, people who knew about supply chains and
manufacturing and all of that to make sure that we put the
funds into the ones that were most promising.
And right now today, Congressman, there's about 2 million
tests being done today as a result of RADx that otherwise would
not have been. Two million a day. Thirty-four different
technologies that we put through this innovation funnel. And
that has opened up a lot of possibilities for things like
getting people back to school, where you have testing capacity
that we didn't have before.
What did we learn about that that applies to long COVID?
Well, one thing I learned was we can do things at NIH in really
novel ways that move very quickly when we are faced with a
crisis like COVID-19 pandemic. We are applying that same
mentality to this effort on long COVID.
Normally, it would have taken us more than a year to set up
this kind of metacohort. We are doing it in a couple of months
because we need to. Utilizing some of those same mechanisms
that you gave us in the 21st Century Cures bill, which has been
a critical part of our ability to move swiftly through
something called Other Transactions Authority. So, yes, we have
learned that.
And by the way, I have to put a little plug here, if you
saw in the President's budget proposal for fiscal year 2022
something called ARPA-H, which is basically bringing the DARPA
attitude to health. That also builds on these experiences and
will give us, if approved by the Congress, the ability to do
even more of these very rapid, very ambitious, yes, high-risk
but high-reward efforts as we have learned to do in the face of
COVID and want to continue to do for other things, like
Alzheimer's disease or cancer or diabetes, because there's lots
of opportunities there too.
Mr. Upton. Well, even though I will be in Michigan tonight
and not on the House floor, I know that work on ARPA-H, but
Chairwoman Eshoo and myself and Diana DeGette were meeting with
the President a little bit more than a month ago, and we talked
about ARPA-H. I acknowledge and support the promise that this
may really provide as we go to the next level. And I would
suspect, I would hope, that the President will talk about it
this evening and that we, in fact, can come back--as you know,
we are looking at a CARES 2.0 bill, and this would be an
element of that that we pledge to work with the President on
that. And I think it can be very, very positive and
constructive, not only for us but for the entire world. And I
appreciate your leadership on that and your good work and look
forward to working with you in the months ahead.
And, with that, my time is expired.
I yield back.
Ms. Eshoo. The gentleman yields back.
And I appreciate what you just said about ARPA-H. That
meeting with the President was bipartisan, obviously, it was
bicameral, and I think shoulder-to-shoulder that this effort
can really move the needle in very important and overarching
ways for people in our country and for the world.
So it really was uplifting and is to be a part of that
effort. And the gentleman has a history of leading on these
issues. So thank you.
The Chair now recognizes the gentlewoman from California,
Ms. Matsui, for her 5 minutes of questions. Great to see you,
Doris.
Ms. Matsui. You too.
Thank you very much, Madam Chair. And thank you for this
hearing, and I want to welcome Dr. Collins and Dr. Brooks for
joining us this morning on this very important hearing.
While primarily it was a respiratory disease, we know that
COVID-19 can also lead to neurological problems. To investigate
these problems, researchers at NIH National Institutes of
Neurological Disorders conducted the first indepth examinations
of human brain tissue samples from people who died after
contracting COVID-19.
Now, Dr. Collins--and it is great to see you--can you talk
a bit about the findings from this NIH study, and what did it
suggest about the likely explanation for COVID-19's many
neurological symptoms?
Dr. Collins. Thanks for the question, Congresswoman Matsui.
This was work done by our investigator in our intramural
program, Dr. Avindra Nath, and he was looking at brain samples
from individuals who had died, many of them suddenly and
unexpectedly. These weren't necessarily people who had been in
the hospital a long time. Some of them never were hospitalized
and then had sudden death.
And he looked very carefully to see what was happening and
found that there was evidence not actually that the virus
itself was present in the brain. It was not possible to find
the actual viral proteins or the viral RNA, but instead a lot
of damage seemed to have been done to blood vessels as if they
had started to leak. Now maybe that was because the virus had
been there and done a hit-and-run and caused that leakage, or
maybe it was a consequence of an overactive immune system
response that had done damage to those small blood vessels, but
that was the finding.
Now, that is very intriguing. That is not what most people
would have expected. I got to be careful, though, not to leap
to the conclusion that the much more common neurological
consequences that people with long COVID are describing in
terms of the fatigue, the depression, anxiety. It would also
have the same findings because obviously what Dr. Nath looked
at were the most dramatic and most tragic circumstances. And it
could be that what is going on in the brain in the more common
circumstances has got a different mechanism. That is one of the
things we need to find out by studying very large numbers of
individuals with the most sophisticated kind of imaging that we
now have at our disposal, and we would aim to do that.
Ms. Matsui. OK. So I follow along what you are saying. What
steps are you planning, has NIH taken or planning to take to
advance research on COVID-19-related neurological symptoms,
complications, or outcomes?
Dr. Collins. Well, first, we need to collect as much
information we can about those presentations, about what the
symptoms are and carefully record those and make sure we use
this common data element so we are talking about the same thing
between different studies, but then I think imaging is going to
be critical here, and we will invite the participants in this
metacohort who have neurologic symptoms--some of them; we can't
afford to probably scan all of them--to look in the most
sophisticated way to see what has happened in the brain. Is
there clear evidence of something in the way of a circulatory
problem? Is there some kind of swelling going on? Is there a
blood-clotting issue? All that information we just don't have,
and that is what we need to find.
Ms. Matsui. All right. Thank you very much, Dr. Collins.
Dr. Brooks, adverse mental health consequences of COVID-19,
including anxiety and depression, have been widely predicted
but are challenging to measure accurately. I am interested in
the role that electronic health records can play in efficiently
providing some of the central information needed to understand
and control the mental health consequences of this pandemic and
plan for the future ones.
Dr. Brooks, you mentioned EHRs can be tricky for mining
accurate race and ethnicity data. Are there similar challenges
to using electronic health records for monitoring the mental
health of long COVID-19----
Dr. Brooks. Sure. There sure are. You know, it requires a
person enter the data and recognize that there is a mental
health problem present, but--so many clinicians are trained and
good at doing that, but as you may have heard, in our business
in medicine, chance favors the prepared mind. And one of our
jobs is to get people trained up to recognize when that is
present and get them to enter it. But there are other ways
electronic medical records can help us, particularly with
disorders like these.
We can look at the prescription drugs they were prescribed,
drugs they may have been prescribed to treat anxiety,
depression, pain, fatigue, and that can be another indirect way
of assessing what is going on. But all of these are,
unfortunately, still an indirect indicator of what the person's
illness journey was actually like. And this is where some other
studies where we follow patients, as Dr. Collins has mentioned,
really can make a big difference.
We can do surveys to measure quality of life, social
functioning, and physical functioning, to actually measure and
quantify what is going on and then correlate that with the
imaging, for instance, that he mentioned before.
Ms. Matsui. OK. Well, thank you very much for your
testimony, both you and Dr. Collins.
And, Madam Chair, I yield back. Thank you.
Ms. Eshoo. The gentlewoman yields back.
It is a pleasure to recognize one of the doctors on our
subcommittee, the gentleman from Texas, Dr. Burgess, for your 5
minutes of questions.
Mr. Burgess. Well, I thank the chair, and I thank our
witnesses for being here today.
Dr. Collins, the observational data that both the vaccine
will help ease some of the symptoms of long COVID is certainly
intriguing, but I think you referenced in your testimony and
certainly we heard on the prehearing chatter across the board
that perhaps the best offense is a good defense, and preventing
the illness in the first place may be our best bet for
preventing patients from getting the symptoms of long COVID.
So is there an opportunity here for that teachable moment
where people who are on the fence as far as to whether or not
they get the vaccine, can we perhaps provide them some
additional information with, like, what we are doing with this
hearing today?
Dr. Collins. Well, Dr. Burgess, it is a great question, and
let me say I just saw yesterday the effort that the Doctors
Caucus has made to get the information out there about the
importance of vaccination.
Thank you for putting on your white coats and making very
compelling statements from the perspective of yourselves as
medical professionals about why this is something everybody
should take advantage of.
I do think that the risks of long COVID has not been
appreciated mostly by the public unless they happen to know
somebody who has been going through this. I think they have
particularly not been appreciated by young people who may
continue to view this as an illness that they don't have to
worry about too much because they heard that young people
generally don't have very severe acute illness, although we can
all say there's plenty of exceptions to that too.
And so I have started talking about it when I am raising
the issue about the importance of vaccination. I worry a little
bit that it sort of feels like, OK, here goes that government
guy shaking his finger at people again, saying these are all
bad things that are going to happen to you if you don't get
that vaccination, which we know is safe and effective.
So I am trying to moderate that a bit by also saying and
think of all the things you can do when you get vaccinated,
like, you know, meet with your friends with your masks off
inside because you have all been vaccinated and you can hug
each other again, which is something we have all kind of missed
for the last year.
Mr. Burgess. That is a perfect segue to, actually, one of
the things I wanted to talk about. Look, we are having a joint
session of Congress tonight. The President for the first time
is going to be present in the Capitol since his inauguration. I
won't be there. This is the first joint session of Congress
that I will have missed in almost 20 years, and the reason I
won't be there is not because I am boycotting but because we
were limited to the number of invitations that could go out.
And, presumably, it has something to do with the continuing,
lingering effects of the pandemic.
But here is the deal. We all got vaccinated very early, as
soon as the emergency use authorization came forward. I can't
say we all got vaccinated, but a great number of us did.
Another number of us have already had the coronavirus itself.
It just seems to me that we are sending the wrong message
because here we were one of the first groups as a body to avail
ourselves of the vaccine, yet we are still behaving like we did
a year ago, like it didn't help us at all. It didn't help us
get over the effects of the pandemic.
So I know that it has been correctly pointed out that there
are others who were responsible for these decisions, but I
would just ask you in your conversations with House leadership
to encourage us as much as is practical to get back to normal
voting patterns, normal hearing patterns, normal visits in the
office. And because of the protection provided by the vaccine,
this is something now we can do and perhaps make that message
more prevalent because there is no question about it, we are
missing something with getting people--getting to all the
people who could be vaccinated, and yet some are holding back.
But I feel like we are sending the wrong message as a body.
So you referenced the Doctors Caucus. We also sent a letter to
the Speaker urging the Speaker to get back to a more normal
activity level in the House because, again, show the power of
having had the vaccine. So, to the extent that you have the
availability of making that which is known to the Speaker, I
would ask that you do so.
And let me also give a plug for, in Cures, we did the
interoperability title in the electronic health records. I am
glad to see that you and Dr. Brooks are using the metacohort
data and the electronic health record data to a good end.
Dr. Collins. That is right. It would make a great
statement, Dr. Burgess--and the Doctors Caucus I know is trying
to push this--if every single Member of the U.S. Congress, all
535 would get vaccinated, even those that have had COVID. You
are better protected to get the vaccine even after you have had
the natural infection, like President Trump did. That would
state to the whole country just how crucial this is for our
future. And I suspect even the Capitol Physician, if everybody
was fully immunized, would say, ``OK, you guys can get back
together again.'' I am not going to speak for that physician,
but I suspect that is the principles that he is looking at
right now.
Ms. Eshoo. The gentleman's time has expired.
I thank the gentleman for raising the points that he made.
I think the Doctors Caucus needs to meet with the Capitol
Physician because the lay persons, whether in leadership or
not, are going with what the determinations are that he has
made. And I think in both caucuses on each side of the aisle,
we really need to urge our colleagues--and I said this as we
were beginning much earlier today--that every Member of
Congress should be vaccinated, and they are not, and that is
holding us back. So I just wanted to add that. But I think if
the doctors meet with the doctor, we might make some better
headway on this because there is no excuse for 535 not being
fully vaccinated. You are absolutely right about that.
So the Chair now has the pleasure of recognizing the
chairwoman from Florida, Ms. Castor, for your 5 minutes of
questions.
Ms. Castor. Well, thank you, Chair Eshoo. This is a very
important hearing, and I am grateful for your leadership in
bringing us together. And Dr. Collins, Dr. Brooks, thank you so
much. Thank you for starting your testimony recognizing this
very difficult year for all Americans. It is just staggering
that we have lost over 570,000 Americans and so many more have
been suffering through with illness or loss. But there is hope
here. I love the conversation on vaccinations. My office, right
outside my door here is the health unit, and when I came in
this morning there was a long line. Remember, yes, it is the
535 Members of Congress, but it takes all of our professional
staff, Capitol Police, the custodians, everyone getting
vaccinated, and I know the Speaker is very eager to get back to
normal because I have raised this with her, and she has said it
is time to move that way. So we all have to do our part here
and back home.
So thanks [inaudible]. Dr. Collins, when you brought--when
long COVID kind of entered into the consciousness last year and
you came with Dr. Fauci and others and said we are going to
need some long-term studies on the long-term effects of the
coronavirus, I was--I think that was very timely. Thank you for
being thoughtful about doing that early on, and I am glad that
Congress responded in a bipartisan way to get those funds, and
here we are. You have--you said 273 proposals already. You are
going to make some decisions next week. I wonder, you know,
when we first started trying to understand what COVID-19 is, it
was most analogous for people to the flu, but when you talk
about flu you don't really think about long-term impacts,
health impacts to people, but there have to be other infections
where we have had long-term studies in place, and we have
learned something about treatments and eventual cures.
Could you provide maybe some analogies on how important it
is to have those long-term studies and look at other
infections, and what we have learned over time?
Dr. Collins. Sure. Obviously, a particularly dramatic
historical example of that [inaudible] is HIV/AIDS, where we
know that somebody infected with that virus can then have
lifelong consequences, which we can suppress with appropriate
antiretroviral therapy. So I would love to be where we are with
HIV for long COVID in terms of understanding the mechanism and
having a treatment, not that I would want anybody to have HIV
long term either.
But we aren't there yet. We don't understand the mechanism
of what it is that is causing this prolonged set of symptoms
for long COVID. It is true that there are two other
coronaviruses that preceded SARS-CoV-2 that got us worried,
didn't spread in the same way and that being SARS--remember
SARS back almost 20 years ago, and then MERS in mostly Middle
East area, and those also were coronaviruses where people were
acutely very sick and then they seemed to get better, but they
didn't get all the way better. So there was a prolonged kind of
potential there of trouble, but there was a sufficiently small
number of infected individuals in that situation to learn very
much about it.
Frankly, I think it is pretty unprecedented for a
respiratory virus like SARS-CoV-2 to do this. Influenza, yes.
If you were in the ICU and you almost died and you had terrible
pneumonia, you would potentially have a long recovery for sure
just getting over that organ damage, but to have a disease that
is a respiratory virus where people, many of them, don't end up
in the hospital but then still 6 months later have serious
symptoms is kind of unprecedented. So we are kind of in new
territory.
Ms. Castor. Dr. Brooks, do you have anything to add?
Dr. Brooks. Yes. First, I want to echo exactly what Dr.
Collins said, particularly, the analogy with HIV. Also, that
the number of people seeking care after recovering from COVID
is really unprecedented. It is not just people who had severe
COVID. It may include people who had very mild COVID. In fact,
we know there is a number of people who never had symptomatic
COVID who then get these long symptoms. And just historically,
the other disease I can think of that may have a little analogy
to this is polio. It was a more devastating sequelae that
people lived with the rest of their lives, but it was thanks to
the enrollment of some early cohorts that these patients
followed over the course of their life that when post-polio
syndrome later came up in the population, we had the
wherewithal to begin to understand it. And it happens with that
condition in many ways sharing some characteristics of this
post-COVID condition.
Ms. Castor. Well, thank you both so much for all of your
work.
Madam Chair, I yield back.
Ms. Eshoo. The gentlewoman yields back.
The Chair is pleased to recognize the gentleman from
Virginia, wonderful member of our subcommittee, Mr. Griffith,
for your 5 minutes of questions.
Mr. Griffith. Thank you very much, Madam Chair. I
appreciate it.
And I appreciate the suggestion that maybe the Doc Caucus
get together with the Attending Physician's Office because,
while I was one of those who was lagging, I lagged because I
had--in getting the vaccine--I lagged because I had had the
disease and felt like others should go first because we do need
to get our staff and other folks who are here in the Capitol
vaccinated as well.
And so I have now had my first shot and will soon have my
second shot, but also had the disease last year. And so we have
got to be getting close, of the 435 of us in the House, we got
to be close to herd immunity if we aren't already there.
That being said, Dr. Collins, if I could ask you a couple
questions.
I have a friend who has long-term COVID. He has been in the
hospital four times with breathing difficulties and just can't
seem to shake it. From a public health perspective, does the
fact that a patient has had COVID-19 change the approach that
you would recommend to the doctors who are treating or taking
care of that individual?
Dr. Collins. That is a great question, and we are learning
as we go. You may know there are now more than 60 clinics that
have set up specifically to try to understand how best to
provide medical care to long COVID sufferers, and you are going
to hear from two of those clinic leads in the next panel from
UCSF and from Yale.
And I think they are trying to see what kinds of things are
going to be most beneficial. It does seem that some sort of
pulmonary rehabilitation and cardiac rehabilitation, if the
symptoms are there, as well as some of the things that are
being done to help with the brain fog, many of which are built
upon experiences we have had helping people who had traumatic
brain injury or concussion.
Those do seem to help, but at the moment it is really kind
of learn as you go. So, yes, I would certainly think somebody
who has got long COVID ought to explain to the physician that
that was their history because the way in which they are going
to be understood and managed is going to be very much related
to that background.
Mr. Griffith. And even if they go in reporting for the
first time and maybe haven't been diagnosed with long COVID
yet, it may be helpful for them to say, ``I had COVID 4 weeks
ago. You might want to be on the lookout for other issues.''
Dr. Collins. Absolutely.
Mr. Griffith. Now, you mentioned the layers of current
research being done on the effects of long COVID. Is there
research being done on the relationship between COVID-19
vaccinations and long COVID?
Dr. Collins. So we do know that there are reports, and we
mentioned this a bit earlier, of people who have long COVID
where the vaccination seems to have provided some relief of
symptoms, but it is not universal, and it can be pretty mild.
Otherwise, just flipping it around the other way in terms
of whether vaccinations prevent you from long COVID, yes, we
believe so in that they prevent you from getting COVID in the
first place, 95 percent efficacy for the Pfizer and the Moderna
vaccine.
So, as all of us have been saying, if you don't want long
COVID, then you don't want COVID, then get a vaccination
because that is the best prevention we have got.
Mr. Griffith. My friend got the COVID and the long COVID
before the vaccination was available to him.
Dr. Collins. Of course.
Mr. Griffith. Yes. So let me ask this and let me give you a
chance for a little advertisement. If somebody would like to
participate in an NIH study, who should they contact or what is
your website that they should go to?
Dr. Collins. That is a great question. Thank you for the
opportunity for the advertisement. It is very easy. You go to
clinicaltrials.gov--clinicaltrials, one word, dot gov--and I
looked the last day or so, there are at least 30 clinical
trials up there right now that are enrolling participants that
are interested in trying to understand long COVID, and that is
even before we make this whole bunch of new awards in the next
3 weeks or so, which is going to greatly expand that. But
people who want to get started now, clinicaltrials.gov.
Mr. Griffith. And, of course, you need as many people as
possible in order to get all the data that you can get?
Dr. Collins. Absolutely.
Mr. Griffith. You don't have just 44 people involved in
long-term study?
Dr. Collins. No. We want thousands. Tens of thousands.
Mr. Griffith. Thanks. I just have a minute left.
Dr. Brooks, vaccines are not currently recommended for
those who have tested positive for COVID-19 within 90 days. Is
that based on concerns about the vaccine interacting with the
virus, or is it an attempt to reserve doses for those without
antibodies?
Dr. Brooks. Right. The recommendation is that persons do
not have to get vaccinated within those 90 days. They could opt
to wait 90 days, but we do recommend that if people want to get
vaccinated, they can.
The concern, though, is that having had the infection, the
residual immune response to the infection may blunt the benefit
that you would get from the vaccine. So we want to give time
that the immune system has basically kind of rested, again, so
that when you give them that vaccine, they have the best chance
of having a good response.
Mr. Griffith. All right. I do appreciate that and encourage
anybody who wants to be in an NIH study to please do so. And I
have told the committee several times I am doing--I think I
might even be in two. But I always go to the same place, and
they take good care of me.
With that being said, I yield back.
Ms. Eshoo. The gentleman yields back, and the entire
committee thanks you for that public service announcement.
Really, everyone has a smile on their face. I saw Dr. Brooks,
thumbs up. So thank you very much for that.
The Chair is now pleased to recognize the gentleman from
Maryland, wonderful member of our subcommittee and full
committee, Mr. Sarbanes, 5 minutes.
Mr. Sarbanes. Yes. Thank you very much, Madam Chair.
I want to thank the witnesses for their testimony today.
Dr. Collins, can you speak a little bit to what the
intersection is of some of these long-COVID cases in terms of
the conditions you are starting to see--and obviously there is
a lot more analysis to be done--the intersection of those kinds
of conditions with chronic conditions that can impact people's
ability to work. And I am thinking about the Social Security
disability categories that result from chronic conditions.
Do you see an overlap there, and what do you think those
implications could be in terms of the workplace and employment
generally?
Dr. Collins. It is a good question. You know, at the
beginning, Dr. Brooks outlined this sort of categorization of
things that are post-COVID syndromes, something we at NIH are
calling PASC, Post-Acute Sequelae of COVID-19. Long COVID is
one of them, and that is what we have been talking about
primarily at this hearing, but there are individuals who suffer
really significant organ damage during the acute illness as,
for instance, somebody who had very severe lung disease ended
up on a ventilator, and that is just going to take a long time
to get back.
And then there are people who have the consequences of
having been extremely ill in the ICU for weeks and the whole
consequence that has in terms of what you have lost in terms of
your metabolism and many things.
So I am setting those in the same context because we need
to worry about how to manage those individuals as well, and the
post-ICU syndrome certainly overlaps with people who have been
in the ICU for other reasons, and we can learn from that. I
think the one, though, particularly people bring up--and they
should--is this particular condition called chronic fatigue
syndrome, or sometimes called MECSF, which was mentioned
earlier by Dr. Brooks, where these individuals do have profound
fatigue, oftentimes after an acute illness of uncertain nature,
which seems like it was probably a virus but generally you
don't know what it was. And then they just don't recover from
that and may end up being bedridden for months or even years.
These are heartbreaking circumstances. We are studying that
at NIH with a program that has been ongoing to try to figure
out what the cause is there. I think the overlap here is
notable in terms of the symptoms, but with the COVID-19
situation, we have the advantage of actually knowing what the
infectious agent was. It is SARS-CoV-2, and we are hoping what
we can learn from that will then map across to things that we
can do to help people with chronic fatigue syndrome who are
suffering many of the same consequences. At least that would be
my hope.
I feel a great deal of sympathy for people who have
suffered from chronic fatigue syndrome over many years and
oftentimes are not being treated by the medical care system the
way they should be, many times sort of frustrating their
physicians and the physicians tending not to take their
complaints seriously. And these folks need our help too.
Mr. Sarbanes. I appreciate that. I mean, I can see what may
be coming is that we will be seeing more cases of permanent
disability coming forward related to long COVID potentially, so
it will be interesting to begin to build those models in terms
of what that impact might be.
Dr. Brooks, I would be curious to hear from you about the
implications of long COVID when it comes to the workload of
healthcare providers across the country. We know we have some
shortages already in certain disciplines in the medical field
in terms of responding generally to the demand for care out
there.
Can you talk about the implications of long COVID against
that backdrop and particularly how it might affect certain
specialties and the need to make sure that the pipeline for
those specialties in the medical field is strong and robust?
Dr. Brooks. Thank you. That is an excellent question. You
know, as Dr. Collins alluded, there are 60 clinics roughly,
maybe more and hopefully continuing to grow, that have stood up
to begin to address this. And what is characteristic of many of
these--and I am sure you will hear this later this afternoon--
is there is no post-COVID specialist yet. Maybe there will be,
but it pulls people from multiple specialties together to
address the problems we are seeing, predominantly pulmonary
disease, rheumatology, neurology, neuropsychology. So those are
areas where we are going to have demand for clinical care with
these sorts of patients.
The burden could be large. I mean, consider that today we
have had almost 33 million infections in this country, and even
if a very small percentage of them go on to have problems, that
is a really large burden. So getting ahead of this with proper
training is important.
Our agency is--part of our agency's mission is to ensure
people recognize the condition and know what they can do to
direct treatment. Ultimately, clinician organizations will pick
up writing the guidelines in the long term, but in the short
term we are pulling that together and helping with that
process. I think----
Mr. Sarbanes. Thanks very much.
Dr. Brooks. Yep.
Mr. Sarbanes. Thank you very much. I appreciate it.
I yield back.
Ms. Eshoo. The gentleman yields back.
And it is a pleasure to recognize the other great American
on our subcommittee, Mr. Bilirakis, for his 5 minutes of
questions.
Mr. Bilirakis. Thank you, Madam Chair. I appreciate it very
much. Before I get into the questions--actually, Morgan beat me
to it, but I wanted to volunteer my services as well, clinical
trial, whatever cohort group because I did--I tested positive
in early January, and I do have underlying conditions. So, if I
can be useful, please don't ever hesitate. Please reach out.
I have a question for the panel before I [inaudible]. How
long would you say, is there a general consensus as to how long
a person is immune once they have had COVID-19 prior to the
vaccine? And I had to wait the 90 days as well because I
received therapeutics once I was treated. I was treated for
COVID. And I did have the first vaccine and plan to get the
second shot next week, and I encourage others to do it as well.
So, if somebody could respond to my first question, I would
appreciate it.
Dr. Collins. Sure. I will do my best, and it is not a
question that I think we have as rigorous an answer to as I
wish we did in part because the virus has been evolving. So one
question is, how long will you be immune to the same virus that
infected you the first time? And we think that is probably
quite a few months.
But then are you immune to a variant of that virus that
emerges, like the one called B.1.1.7, which now is almost 60
percent of the isolates we are seeing in the United States
after it ran through the U.K. and then came to us. That degree
of immunity will be somewhat lower.
The good news here, though, is--and this may surprise
people--the vaccine actually provides you with better broad
immunity than the natural infection. You don't quite expect
that to be the case. Usually you would think natural infection
is going to be the way that revs your immune system to the max
and the vaccine is like the second best. It is flipped around
the other way in this case, and I think that is because the
vaccine really gets your immune system completely awake,
whereas the natural infection might just be in your nose or
your respiratory tree and didn't get to the rest of your body.
With the vaccine, we think the immunity has at least 6
months, but is it longer than that? We don't know yet because
this disease hasn't been around long enough to find that out.
And, so far, the vaccines--the Pfizer, the Moderna--do seem to
be capable of protecting against the variants that are now
emerging in the U.S., like this B.1.1.7.
Mr. Bilirakis. Well, thank you very much. I appreciate it,
Dr. Collins. That was a great answer.
Dr. Brooks, can you discuss the study CDC has already set
up to follow cohorts of patients post-infection? What analysis
has CDC conducted or recently published using already available
data? Do these long COVID [inaudible].
Dr. Brooks. I can't hear.
Ms. Eshoo. I think Mr. Bilirakis' connection has somehow
failed.
Dr. Brooks. Madam Chairwoman, would you like me to try and
answer, or should I wait?
Ms. Eshoo. Sure. Go ahead. Can you hear us, Gus? Are you
back on?
No, he isn't, but--maybe he can hear. Why don't you take
his question, please.
Dr. Brooks. Yes. I would be happy to, and hopefully it is
recorded so he can get the response if he is not hearing it
now. So, as I mentioned, we have eight prospective cohort
studies that are collecting information on people during the
post-COVID period and also doing electronic health record
analyses. And actually the data that we have published most
recently has been the study I think you referred to in your
opening remarks, the study with Kaiser Permanente Georgia
published in our MMWR, and this is telling us and is consistent
with what others are reporting as well that it is a common
problem after COVID for people to continue to have some
residual symptoms or complaints that they seek care for.
They do begin to go down over time for some people, but
they can persist very long for others. I am sorry I didn't
catch the rest of his question. If you did, maybe you could
share it. I would really be happy to try and answer.
Ms. Eshoo. I didn't. Did Dr. Collins? I don't know. Dr.
Collins, did you catch----
Dr. Collins. I am afraid I didn't. I think Congressman
Bilirakis' link locked at the same moment for all of us.
Ms. Eshoo. OK. All right. Well, maybe we can when he has
reconnected, maybe we can circle back with him, and he
certainly can re-ask the question in the printed questions that
we--every Member can submit to witnesses. So I believe that the
gentleman yields back.
And now, wonderful Member from Vermont, colleague Peter
Welch, you are recognized for 5 minutes of your questions.
Mr. Welch. Thank you very much, and thank you very much to
the witnesses, the extraordinary work that you and your
institutions are doing. First question is this: With respect to
the long haul and the necessity to come to some consensus about
what that is, what the symptoms are, how you differentiate
between a complaint that is related and a complaint that is
not? What is the best methodology by which we can come to a
medical consensus on that, because I would regard that as
essential to coming to a consensus on how to treat it. I will
start with you, Dr. Collins, and go to you, Dr. Brooks.
Dr. Collins. That is a wonderful question, and it is a
really serious challenge for all of us with such heterogeneity
in the symptoms that individuals are experiencing. I think with
a large collection of a very large number of people who are
suffering these symptoms and enable assists from some machine
learning efforts to try to identify what is the clustering of
symptoms that makes the most sense as far as some kind of
uniform view, that should get us closer than we are right now
to saying what is the case definition. But I should turn this
over to Dr. Brooks because CDC's very much engaged in this
issue of trying to come up with case definitions.
Mr. Welch. Thank you.
Dr. Brooks. Thank you. And, Dr. Collins, that is right. A
lot of it is--this machine learning you pointed out is a new
tool we have had in the last 10 years or so that is very
useful. We also pull in information by scanning data sets,
looking for what people are doing in terms of what visits they
are making to doctors, to see the specialists they are going
to, the drugs that are being prescribed. We also interview
groups of doctors caring for patients to try and get a smell
test as we are arriving at some definition, does this really
fit what we are seeing? And we also bounce that off of patients
and patient advocates, again, to make sure that we are homing
in on something that comports to what their experience has
been.
What really makes this a challenge is the broad
heterogeneity. And so we have got a lot of work to do. People
around the world are working on this.
Mr. Welch. Well, thank you. And the followup on that and
this whole question of data collection that is so critical to
diagnosis and then treatment. There is a challenge with our
BIPOC community and with our lower-income communities that are
spread throughout the United States of getting this accurate
data as we need.
In fact, what you were just describing, Dr. Brooks, is the
more data, the better. So, if there are certain communities
that, for a variety of reasons, we don't get the information,
that compromises your ability to come to conclusions.
So my question is, first of all, do you agree that there
has to be additional efforts to get data from communities where
we don't have all the data that we need, and what can we do to
allow that to happen?
Dr. Brooks. I absolutely agree that we have to get these
data--these are the most affected communities by COVID to begin
with and therefore where we expect the greatest burden of post-
COVID illness to be. So that is a critical part of what we are
doing. The methods that we use, a typical one is to over-enroll
people from these minority communities, whether it be minority
by race, ethnicity, by income, and other groups.
We also want to make sure we focus on groups that are often
affected very heavily by COVID but may not be in the spotlight.
People who are challenged by housing or justice involved.
People in incarceration are going to experience this too, and
they deserve to understand what is going on to be offered the
best care that is available.
Mr. Welch. Well, I appreciate you saying that. We all
deserve it, wherever the person is, but we all need it. We need
that data in order for you to do their job, and my hope is
that--and I am sure you are doing this, both the NIH and CDC,
the lessons learned after analysis, because I think a lot of us
are now aware that this may not be a one-time event. We have
got to be prepared for this happening again.
So thank you very much.
Madam Chair, I yield back.
Ms. Eshoo. The gentleman yields back.
Our subcommittee is really blessed to have physicians,
doctors, and I want to recognize now the doctor from Indiana,
Dr. Bucshon, for your 5 minutes of questions.
Great to see you.
Mr. Bucshon. Good to see you, Madam Chairwoman, and thank
you for the time.
Dr. Brooks, I have a daughter who has had COVID and has
persistent problems with her smell and not as much her taste.
Do we know specifically exactly what COVID did to the person's
neurologic system or whatever to cause that? And based on
historical problems with that system, the neurologic system,
the chance for recovery?
Dr. Brooks. That is an excellent question. In particular,
because anosmia, or the loss of smell or change in smell, is an
often overlooked but surprisingly common problem among people.
Mr. Bucshon. Yes.
Dr. Brooks. But this disease really seems to target that
and cause it. I can say this: I have had a particular interest
in this topic. The reading that I have been doing seems to
suggest that the virus isn't necessarily targeting the
olfactory nerves, the nerves that transmit smell, but more of
the nerves that are sort of around and supporting those nerve
cells, and it is the swelling and the inflammation around those
cells that seems to be leading to some kind of neurologic
injury.
I will say the good news is that many people will
eventually recover their sense of smell or taste, but there are
others in whom this is going to be a permanent change.
In terms of treatment, smell training--interesting therapy,
but it really works. And I really want to raise people's
awareness around that because the earlier you can begin smell
training, the better the chances that you will recover your
sense of smell.
Mr. Bucshon. Yes. She had COVID in late November, and she
is still having issues with her smell. So I will tell her what
your recommendations are.
Dr. Collins, in your testimony, you mentioned that the
funding the NIH receives from Congress to help examine and
research long COVID--and I am constantly a supporter of
enhancing your funding, by the way, and remain committed to
doing so, especially for research like this. I realize this may
be a little bit premature based on what we have been talking
about, but what percentage of the NIH funding is going to be
directed towards potential therapies for long COVID in the
coming months?
Dr. Collins. It is not premature at all, Dr. Bucshon, and I
appreciate your asking it. And I think patients who are
listening to this hearing probably are really interested in
knowing what is this metacohort all about, and is it basically
just collecting information? Are you all about trying to find
answers?
We are all about trying to find answers. So we would aim to
initiate therapeutic interventions as soon as we have this
cohort together and begin to imagine what might potentially
work.
In a way, you could say we have already started that in one
instance because we are running a lot of clinical trials on
acute COVID, and at least one instance, we have now enrolled
participants who are over their acute phase in anticoagulants
because we think maybe the ongoing hypercoagulable state where
you have small blood clots affecting various organs may be part
of long COVID. So that one is already underway, but there will
be other opportunities to do this. We will have to think about
what exactly would be the safe kind of interventions that have
a decent chance of success, and we would design those as
randomized trials so we will really know if they worked or not.
But I want to say, yes, very much to everybody who is
listening: This is not just admiring the problem. This is
actually getting the data we need to initiate the interventions
that we hope will help.
Mr. Bucshon. Yes. And I want to make sure that we provide
you the resources to do that. And you mentioned, I think,
anticoagulants. Do you have any other possible treatments that
you are already looking at other than the anticoagulants for
long COVID?
Dr. Collins. Well, certainly, people are contemplating
whether this would be an instance where steroids or other
immune suppressants might be helpful because there is some
possibility here that this is an autoimmune condition, and we
know in other autoimmune conditions, that can help, or even
such things as giving intravenous immunoglobulin, which we know
can also sometimes help in an autoimmune situation.
All the things that are currently on that list are chosen
because they are known to be relatively safe. I don't think we
are ready to start giving toxic substances until we know things
a little better.
Frankly, you are an experienced physician. It is always
easier to know what to treat the patient with when you
understand their condition.
Mr. Bucshon. Yes.
Dr. Collins. And here we are. We don't know whether long
COVID is because there is a persistence of the actual virus in
the system, in which case maybe that is why immunization is
working, or maybe it is an autoimmune response, or maybe it is
a consequence of blood clotting that has left damage in various
organs, or maybe it is something we haven't thought of yet. And
the most critical thing is to get all of that clinical data,
develop those biomarkers, and then we will be able to target
the therapy in a more rational well.
Mr. Bucshon. Well, thank you for that, Dr. Collins and Dr.
Brooks. I appreciate that.
And, Madam Chairwoman, I yield back.
Ms. Eshoo. The gentleman yields back.
Important questions and observations in that exchange.
With the permission of Members, I want to circle back with
Mr. Bilirakis and allow him 1 minute to ask the question that
none of us heard. We are dying to hear it.
You need to unmute, Gus.
Mr. Bilirakis. Here we go.
Ms. Eshoo. There you are. OK. You have a minute.
Mr. Bilirakis. I am so sorry. OK. I have a minute, so I
will be quick.
Dr. Brooks, can you discuss the study CDC has already set
up to follow cohorts of patients post-infection, what analysis
has CDC conducted or recently published using already available
[inaudible]? Do these long-COVID symptoms eventually resolve,
and is there any data, anecdotal or otherwise, that suggests
this COVID vaccine may help reduce symptoms for long-haulers?
Now, I know you covered this, but you may want to elaborate
a little bit on this.
Dr. Brooks. Pardon me. I am going to try to do it in a
minute or less. So we have large cohort studies. They are
underway. We have published data most recently that the
chairwoman mentioned during her opening from the Morbidity
Mortality Report in collaboration with Kaiser Permanente
Georgia showed that there was remarkable incidence of people
seeking care after recovery, unheard of with most illnesses of
this kind like flu.
So that is a warning sign. We also were using electronic
health data combined with cohort studies to look at all of
these kinds of questions. We have a number of publications in
the pipeline that you should be seeing shortly in journals, as
well as the MMWR. And I will also point out there is some
excellent studies--we are not--we don't hold all the
information. They are fantastic studies also by some of our
colleagues out there, in particular, one from a group in St.
Louis at the Veterans Administration Hospital, a place that I
have worked for many years and love.
Lastly, to your question about does vaccine help with long
COVID: It has been mentioned a couple of times there are these
well-reported anecdotal instances and even some early research
data that suggests they may, but we really need more robust
data to say that with a surety and to know how to use
vaccination, if we can, to ameliorate the post-COVID
conditions.
Mr. Bilirakis. Thank you very much.
And I want to yield back, but I want--Dr. Collins, my dad,
Congressman Bilirakis, says hello. Take care.
Dr. Collins. Thank you. Please tell him hello back.
Ms. Eshoo. And the gentleman yields back.
We all remember and have great affection and respect for
your father, who was the chairman of this subcommittee during
his service in the Congress.
The Chair now is pleased to recognize the gentleman from
Oregon, Mr. Schrader, for your 5 minutes of questions.
Mr. Schrader. Thank you very much, Madam Chairwoman. Good
hearing today. Very interesting. Learning a lot.
Dr. Collins, given the fact that the symptoms of long COVID
mimic the symptoms of a lot of other diseases, I guess a very
basic question is, how are we just ruling out these other
diseases coincidentally showing up in these patients?
Dr. Collins. Another great question. The easiest way to be
sure in a given individual that this is a consequence of the
COVID infection is to have absolutely clear definition that
they had the acute illness with the positive viral test. If
that is not available, then an antibody test to show that they
previously had it.
Having said that, going back a year where tests were not so
readily available and the antibodies may have waned by now, we
have a lot of people, and you will hear in the second panel
what this has been like for folks who have the symptoms of long
COVID but don't have this clear laboratory evidence of having
had the acute infection. And we need to take care of those
folks as well.
But more recently now that I think we have widespread
testing that is available, and we talked about RADx a bit
earlier, which has contributed to that, I think we are in a
circumstance to be able to have that part of the diagnosis.
But I think maybe your question is also suggesting maybe
there are people who had acute COVID infection and now they are
having something else that isn't really related to that but was
going to happen anyway. Somebody who has the onset of a new
illness like rheumatoid arthritis, and so they are having a lot
of joint pains. You might assume, therefore, oh, this must be
long COVID, but it might be something else. So the people who
are running the clinics, and you will hear from two of them in
the next panel, have to watch closely that we don't end up
merging together conditions that don't belong there and maybe
things that really aren't long COVID but deserve a different
kind of treatment need to be recognized and appropriately
managed.
Mr. Schrader. On one of those diseases, I have got,
unfortunately, some constituents who suffer from chronic
fatigue syndrome, ME, and, you know, very concerned, you know,
about that and wondered, you know, that is an entity, as I
understand it, unto itself, but one of the main symptoms that
folks with long COVID talk about is this chronic fatigue. And
as I understand it, with some of the studies on chronic
fatigue, they think it might be virally induced. Could it be
that other viruses, other things have caused this, and are
there studies going on right now with long COVID causing or
increasing the frequency of chronic fatigue syndrome?
Dr. Collins. There is certainly a lot of overlap in the
symptoms, and I think we need to learn from that. People with
chronic fatigue syndrome many times report an acute illness
that sounded like it was a viral infection of some sort, a
fever, maybe being in bed for a day or two, but then they don't
get better. And that has a lot of overlaps now with what we are
seeing with long COVID.
With chronic fatigue, though, we almost never actually
catch the original infection in the act, so we don't know what
it was, but it could be that this is a pathway that other
infections can also induce occasionally in individuals. My hope
would be that, as we study long COVID and look at those
comparisons with chronic fatigue syndrome, we will learn a lot
about both of them. We will figure out how they are similar,
how they are different, and how, if we can identify
interventions, they might work for both of those groups because
there is lots and lots of people with chronic fatigue syndrome
who are still waiting for something that is going to help them.
Mr. Schrader. Right. Right. Yes. Might be some overlap. I
guess, lastly, my team and I have been reading a little bit
about high levels of cytokine secretions that occur sometimes
in relationship to the disease and wonder if that is a
biomarker for long COVID potentially, and are you looking at
other biomarkers to, again, help us get a handle on cause and
effect?
Dr. Collins. Well, you are right on the place we need to
go, and certainly we see cytokine elevations, even cytokine
storms in people with acute illness, particularly those that
are very sick in the hospital, but it hasn't been so obvious in
people months later who are still suffering from long COVID.
There is a very interesting paper just came out about a few
days ago in the journal called Nature where they studied 73,000
veterans and followed them 6 months after they had an acute
COVID infection and looked to see were there any kind of
markers there. There is nothing that jumps out at you, like,
oh, wow, that is it, but there are laboratory abnormalities
that do seem to occur more frequently in people with long COVID
than in the people who didn't end up with that consequence.
So that is kind of a start. We want to take that kind of a
study and expand it even more rigorously to more and more
groups, but that was a really important one.
Mr. Schrader. Very good. Very good. Well, thank you, Dr.
Collins, for all your work and thank goodness we have NIH, and
you are doing wonderful things and look for more great things
in the future.
And I yield back, Madam Chair.
Dr. Collins. Thank you.
Ms. Eshoo. The gentleman yields back.
The Chair is very pleased to recognize another one of our
doctors, Dr. Neal Dunn from Florida.
And he will be followed by Congressman Cardenas from
California. So I think I will announce that so Members will
know who's next in the lineup.
So you are recognized for 5 minutes for your questions.
Mr. Dunn. Thank you very much, Madam Chair. I am pleased
the committee is holding this hearing today about the long-term
health complications that can follow COVID-19 infections. I had
the opportunity to meet with a group of COVID long-haulers from
Florida last week, and hearing from these patients confirmed my
impression about the mysterious and lingering medical
conditions that affect a number of COVID survivors, even long
after the infection has past.
The group I spoke with had teamed with an advocacy group
for myalgic encephalitis and chronic fatigue syndrome as my
colleague, Representative Schrader, just mentioned, diseases
that also affect and debilitate multiple body systems often
following a viral infection. And their hope was, of course,
that existing research on MECSF can shed some light on why
COVID patients are facing an array of symptoms that are often
similar.
So I commend our witnesses and our researchers from other
academic institutions for their rapid response to this problem.
One question they had that really stuck with me from that
conversation with one of my long-haul constituent patients was,
how do I get my doctor to believe me? And this came from a
constituent who had--a doctor--who had some, quite frankly,
perplexing symptoms and had never tested positive. So--and this
was just mentioned also. To that problem determining who has,
indeed, been infected with SARS-CoV-2, don't you think we need
to immediately scale up our ability to test for patients for
humoral immunity to COVID, not just antibodies but testing for
T cell immunity, which we know is a much more reliable test for
prior infections no matter how far in the remote past?
Dr. Collins, I am unaware of a shark tank actually
addressing that problem.
Dr. Collins. This would be a great shark tank opportunity
for sure. Dr. Dunn, you ask a great question. One of my other
jobs in COVID is cochairing the effort between industry and NIH
and CDC and FDA on everything we are doing about COVID
therapeutic trials.
We had a big discussion just this morning about T cell
testing and why we are not doing more of that in terms of the
ability to assess response to vaccines as well as to natural
infection. And there was, shall we say, a vigorous disagreement
amongst the experts about exactly how to do it. And that was
the problem. People hadn't quite arrived at a consensus about
what is a reliable way to assess T cell response, whereas
measuring antibodies, everybody kind of agrees how you do that.
Mr. Dunn. Well, we have the tests, though, that we use for
T cell immunity, and I have read papers on how to scale it up.
So I am hoping--you know, nobody is better qualified to scale
this up than you. So I am not going to charge you with this, I
guess, the responsibility, but I would encourage you to look
into it vigorously.
And by the way, I want to be the first to say that I don't
think every single primary care physician or urologist, like
myself, to be up to date on the latest research of long COVID,
but I do hope that we are empowering all the physicians with
the information they need to best serve their long-haul
patients or direct those patients to the proper specialists.
So, you know, to that question, I would ask both Dr. Brooks
and Dr. Collins, what educational resources can you direct
physicians like me for patients who present with these curious
long-term symptoms following COVID? And have we developed a
sense of recommendation regarding which specialists are best
equipped to assist these patients?
Dr. Brooks. I am happy to answer that question. I mean,
this is something we have been working on since--very early
when we recognized long COVID. We hold regular webinars and
calls for clinicians they can call into. These are often
attended by thousands of providers. We use these as an
opportunity to raise awareness. Because I think you made a
really critical point that patients feel like their doctors
don't recognize their problem or they don't accept that it is
possible they have this condition.
We use those calls in webinars to raise awareness that this
is a real entity. We also then publish papers and put out
guidelines that illustrate how to diagnose and begin to pull
together what we know about management.
We have completed a first draft of interim guidelines that
are in the clearance process, we call it, here at CDC. They
should be coming out very shortly. They were drafted in
collaboration with multiple physicians groups, also passed by a
number of advocates with the patient population. And we will
continue to do that. They will be updated regularly.
They emphasize a couple of points to what you said,
particularly the multidisciplinary nature of what you need to
do to manage these folks and how important it is to recognize
that you may have this disorder and direct them to care----
Mr. Dunn. Dr. Brooks, we are going to get cut off here in
just a second. But if you could just either put me on a list
that gets that information.
Dr. Brooks. You bet.
Mr. Dunn. I am easy to find. Or you can tell us right now
and I will write it down.
Dr. Brooks. Sure.
Mr. Dunn. Where do I go?
Dr. Brooks. You go to cdc.gov and look for COCA calls.
Those are Clinician Outreach and Community ... something. I
am--a bad acronym, I am very sorry. Community something. I will
get it to you.
Mr. Dunn. All right.
Dr. Brooks. Look for our guidelines. They will be
advertised heavily to clinicians because we want to ensure
people like yourself get them.
Mr. Dunn. Thank you so very much.
Thank you, Madam Chair. Thank you for your indulgence. I
yield back.
Ms. Eshoo. Thank you, Doctor. It is great to get that
information out, because our constituents need to know if their
doctors know. So it is really elemental.
It is a pleasure to recognize our patient colleague from
California, Mr. Cardenas, for his 5 minutes of questions.
Mr. Cardenas. Thank you very much. I am glad we got that
glitch out this morning so we could continue this amazing
hearing.
Ms. Eshoo. Yes.
Mr. Cardenas. And I just wanted to take the opportunity to
thank Dr. Brooks and Dr. Collins for committing themselves to
public service. This is critical that we are able to pursue
what you are doing and your respective duties because it truly,
truly, truly is lifesaving en masse, actually. So thank you so
much for making yourself available for this hearing.
And I just want to remind the public that this really is
what Congress is about. You have people from all over the
country, from all walks of life, learning from these two
experts and then from the next panel so that we can make
decisions and we can actually legislate for the people of this
country. And fortunately enough, we are the leaders in the
world when we do it right. So I just wanted to thank the public
for tuning in to this important discussion.
Social determinants of health are the conditions in the
environments where people are born, live, learn, work, play,
and worship, and have a major impact on people's health, well-
being, and quality of life. Examples of social determinants of
health include things like access to nutritious foods and green
space, clean air and water, safe housing, and transportation
options.
Dr. Collins and Dr. Brooks, could you discuss the
relationship between social determinants of health and COVID-
19, as well as on long COVID? And what are some of the ways we
can respond to these things?
Dr. Collins. Well, that is a profoundly important question.
Certainly, we have seen it is unmistakable that social
determinants have played a major role in who is most likely to
have been affected by this terrible pandemic. This has hit
particularly hard in those same communities that already
suffered from health disparities: African Americans, Latinos,
Native Americans. And that is not because they have some
different genetics. Even though I am the geneticist, let me say
I don't think that has anything to do with it. It has to do
with their access to care, with their ability to be able, if
faced with a pandemic of this sort, to isolate at home, like I
have been doing for the last year, or whether they have to be
out there going to work in order to put food on the table.
So if you needed any more evidence that our healthcare
system does not give equal treatment to everybody, look at
COVID-19, because the consequences are quite obvious. And a lot
of that is the social determinants and the way in which our
society does not provide those kinds of opportunities for
health equitably to everybody. And that will play out and
already is in terms of long COVID, because the gateway to long
COVID--a terrible gateway that it is--is getting COVID in the
first place and knowing, therefore, that these underserved
communities have been hit twice as hard or, in some cases,
three times as hard with the original infection. You know that
is going to also play out in terms of what happens next.
And we also know that people with long COVID who come from
underserved populations are less likely to get the kind of
medical care that they now are looking for, just because of the
way our system is set up. So there is all kinds of aspects
about this that is shining a bright light upon the way in which
our system in this country needs a lot of work. If we are going
to take what we have learned about social determinants in
health and the inequities that are attached to various other
aspects of our society and try to implement those in a way that
would be more equitable and just and fair--and that is a long,
hard problem that we have lived with for far too long, but I
hope this is one of those moments where we can look at it
collectively and try to see what we can do about it.
Mr. Cardenas. Thank you.
Dr. Brooks. I would just like to add that this COVID-19--
this pandemic has been unprecedented in terms of really
revealing long-standing social inequities, sometimes even
embodied in what we call structural racism that are driving the
disparities that we are now measuring. It is not pleasant to
watch these numbers coming in and see how this is playing out.
However, as Dr. Collins noted, this is also an opportunity
to start making changes that will help rectify some of those
inequalities. And we do it not only by addressing differences
by race and ethnicity, but also imbalance in terms of rural or
urban or by educational attainment or by income inequity.
I think a critical thing to do first, though, is to listen
to these communities. We have learned in our agency that before
you go offer help to somebody, find out what they want so that
you could learn what is the help that they need and it is going
to resonate with them. And we spend a lot of time doing that as
we introduce studies into communities, understanding sort of
how that might play out, how we can help address the problems
that they are facing.
Mr. Cardenas. Thank you. And with the few seconds I have
left, I just want to encourage, of the 27 institutes and
centers within the National Institutes of Health is the
National Center for Complementary and Integrative Health. I am
hoping that they are as involved as any other portion of your
research to make sure that we get those answers and the
solutions we need for all of our constituents.
With that, I yield back.
Dr. Brooks. And they are.
Ms. Eshoo. Unmute. The gentleman yields back.
It is a pleasure to recognize the gentleman from Utah, Mr.
Curtis, for your 5 minutes of questions.
You need to unmute. Can't hear you.
There you are.
Mr. Curtis. [Inaudible.]
Ms. Eshoo. Mr. Curtis, there is something wrong with the
transmission and----
Mr. Curtis. Is that better?
Ms. Eshoo. Oh, that is much better.
Mr. Curtis. All right. I was using a remote mike and I just
unplugged it. Thank you. Thank you for your patience.
Ms. Eshoo. Now we can hear you loud and clear. You may
proceed.
Mr. Curtis. Thank you very much.
I wanted to join my colleagues in their appreciation for
our witnesses and for this hearing.
And let me start with you, Dr. Collins. I believe that NIH
recently started granting resources to research institutions
like Harvard to study long-COVID patients. And I am curious if
you are seeing trends among the patient population that you are
studying that you have observed. For example, do patients with
underlying health conditions, are they more likely to have long
COVID? I am curious what you are seeing there.
Dr. Collins. Well, yes. When one looks at the resurgence
already going on, there is a lot happening, not quite yet on
the scale that we think we are going to need to really
understand this with a level of intensity that it deserves. But
it certainly does seem that the risk of developing long COVID
goes up.
It is fairly clear that the initial seriousness of the
initial illness is somewhat of a predictor. Certainly, people
who are in the hospital have a higher likelihood of long COVID
than people who stayed out of the hospital. But people who
weren't hospitalized can still get it. It is just at a somewhat
lower rate. It is even possible, if you look at the symptoms
that somebody suffers in their first 7 days of the acute
illness, to do a pretty good prediction now about whether they
are likely to end up with long COVID. That is a paper that has
just recently come out that looks fairly compelling but needs
to be replicated.
The risk factors: older-age people, higher likelihood.
Women have a slightly higher chance of developing long COVID
than men. BMI, obesity also seems to be a risk for the
likelihood of long COVID. Beyond that, we are not seeing a
whole lot of things that are predictive. And there must be
things we don't know about yet that would give you a chance to
understand who is most vulnerable to not be able to just get
this virus out of there and be completely better. But we don't
know the answers just yet.
Mr. Curtis. I think we are all looking forward to answers.
Let me build off of that question and also refer back to
something a couple of my colleagues have asked about. And Dr.
Dunn was very good about asking this from a physician's
perspective.
I would like you to put a patient's hat on for just a
minute and go back to the same theme of, like, how do we know?
And hypothetically, during this last year, every time I get a
runny nose, a cough, or a headache, I would run down to be
tested, thinking, oh, my goodness, I have COVID. And, for
instance, a seasonal allergy could give me a headache or
drowsiness. From a patient's perspective, how do they know to
seek out treatment? And, two, where do they go for that
treatment?
We have heard today that can be very confusing, from a
doctor's perspective, even more so imagine from the patient's
perspective. So what advice to those people listening to this
hearing today who think that they may have some long-term
symptoms do you have?
Dr. Collins. Dr. Brooks, I think CDC is right in the middle
of that.
Dr. Brooks. Yes. Thank you. That is an excellent question.
And I would advise patients a couple of different ways. First
of all, if you are having symptoms that you haven't had before,
something new following your COVID--chest pain, difficulty
breathing, you can't get your thinking clear, you are just not
getting better the way that you thought you should--have a low
threshold to seek care. Your primary care physician can help
determine if it is something else that is causing those
symptoms, or maybe it is long COVID. But one of the first steps
is to make sure it isn't something else that we can treat and
take care of.
Also, documenting that there was a COVID infection can be
very helpful. However, as Dr. Collins pointed out, we have an
awful lot of people who never had the opportunity to be
diagnosed but developed these symptoms, so we don't have that
clue.
And then lastly, the temporal association, that is the
timing of what happened. You felt sick with a disease that
looked a lot like COVID, and then weeks or months later you are
still having this cough, your fatigue is just getting worse, I
can't think clearly, and my sense of smell is not coming back
the way that it was supposed to. That should bring people to
medical care.
I hope that--you know, sometimes we worry a lot about
driving people to care who were worried but really generally
doing OK. But in this case, while we are learning more about
this, that may be all right for the short term until we really
can discriminate more clearly what defines this. We are in that
stage of learning.
Mr. Curtis. And just with a couple seconds left, where do
they go? Do they go to their primary care physician? Do they
need to go to a specialist? Where would you send them?
Dr. Brooks. I would urge they start first with a primary
care clinician. And if they are concerned about potentially
having post-COVID, they could try to seek out a post-COVID
clinic in their area, if there is one there. They tend to be
right now affiliated with academic centers and hospitals that
tend to be in large cities. That may not be available to
everyone. But one of our duties, our mission at CDC is to raise
awareness among frontline providers to recognize this syndrome.
Mr. Curtis. I am sorry to cut you off.
Madam Chair, thank you for the few extra seconds. I yield
my time.
Ms. Eshoo. Absolutely, Mr. Curtis. And we restored the 30
seconds that were lost because of a bad mike. So thank you.
And the gentleman yields back.
A pleasure to recognize another one of our physicians on
the subcommittee, Dr. Ruiz, of California. You are recognized
for 5 minutes.
Mr. Ruiz. Thank you, Chair. And thanks to both of our
witnesses today.
We have clearly not even scratched the surface of what
there is to learn about long COVID, how it affects individuals
physically, mentally, and even economically. And as a doctor, I
am very concerned about the initial research that I have seen.
As someone who grew up and then practiced medicine in a
farmworker community with low health access, I am worried as we
learn more that our historically underserved communities will
once again be left behind, just as they were with testing and
now with vaccination rates. I applaud the actions the Biden
administration has taken to address these issues. And moving
forward, we must be vigilant to make sure our underserved
populations do not get left behind as we study, identify, and
treat long COVID.
Dr. Brooks, I was pleased that your testimony made multiple
references to equity and disparities. It is clear that you
recognize the importance of the issues and that it will be at
the forefront of your work. In your testimony, you acknowledged
that there are barriers to accessing post-acute COVID care
clinics such as transportation or insurance coverage. What is
the CDC going to do, and what can Congress do, to address these
barriers and increase access for all populations to get the
post-acute care that they need?
Dr. Brooks. Thank you, Congressman, for that question. It
is really a critical one, because you have pointed out some of
the important disproportionalities that have been occurring in
this country around COVID. And in some ways they are baked in a
bit, and we want to fix that.
One of the first things we are doing is we have put about
$3 million, if I am not--$3 billion, rather, into building
vaccine confidence, focusing on underserved communities in
particular.
In addition, we have created $2.2 billion worth of funding
opportunities for people to help address these disparities and
bring the care and the knowledge necessary to the communities
like the one you were describing so they can get the access
that they need.
And then I think a really important aspect that I
particularly like is building this core of community health
workers. We have invested about $300 million into community
health workers who ideally are from the communities that are
infected and can be trusted messengers with that constituency.
Mr. Ruiz. I am a big fan of the community health worker
model ever since my medical school days with Partners in Health
program. And in the Hispanic communities they are called
promotoras, and they have been integral in doing the outreach
to the hardest hit, hardest to reach communities in my district
and throughout our Nation.
I am just concerned because disproportionately Hispanics,
African Americans, Native Americans have been infected at a
higher rate, dying at a higher rate. They will have the long
COVID at a higher rate. And we need to make sure that as we
build a system of post-acute care for long COVID, that we don't
use traditional systems of just tertiary care, affluent
hospitals being the locations of these treatment centers. We
need to make sure that we take them down into the communities.
So you also in your testimony talked about efforts to raise
awareness of post-COVID conditions among patients and
providers. What efforts are being made to target the
underserved communities?
Dr. Brooks. Right. That is an excellent question. So we
work very closely with a number of types of groups of people to
try and bring these messages that we are sharing with
clinicians right now also to providers that are not just--
necessarily have all the access in the world to the internet,
like we hope everybody has, but also some people who may not
have that kind of access. We work with community-based
organizations, community health workforces that may be in the
field, our allied partners and pharmacies. And then we also tap
into the wealth of the colleagues that we have, who have
specialized knowledge and relationships with these communities,
like the Hispanic Medical Association and the National Medical
Association, as well as other national organizations that are
empowered as being trusted messengers, like the Urban League.
You know, this is an area that we are going to be hopefully
paying a lot of attention to as we begin to develop more----
Mr. Ruiz. Well, I can assure you that the Congressional
Hispanic Caucus will be paying a lot of attention----
Dr. Brooks. Good.
Mr. Ruiz [continuing]. And will be insuring that you all
pay close attention to these issues, because equity needs to be
part of the design, not an afterthought of policy.
Let me ask you another question while I have you and Dr.
Collins here. Multisystem inflammatory syndrome in children has
disproportionately affected African Americans and Hispanic and
Native American kids. Up to three out of four children who
suffer from this illness are minorities. One, have we found
long--what is the rate of long COVID in these children? And,
two, what is NIH and CDC doing to address multisystem
inflammatory syndrome in children?
Dr. Brooks. Well, I will use the acronym MIS-C,
multiinflammatory syndrome in children. The good news here is
that when recognized early, almost every child does well and
gets better. To the best of my knowledge, we really haven't
seen a lot of long COVID, if you will, the way we are
describing it in these children. Early recognition is key here.
We have also developed case definitions, provider
information, aiming at providers who treat populations of
children who come from racial and minority communities to raise
the flags when they get early recognition of these, of the
possibility of this condition.
I just want to also add that we see this in adults. And the
demography is similar that it tends to be in the populations
most heavily affected by COVID, those that are racial or ethnic
minority or underresourced, and we are trying to raise
awareness in the same fashion among those communities.
Mr. Ruiz. Thank you. My time is up.
Ms. Eshoo. The gentleman yields back.
The Chair now has the pleasure of recognizing another one
of our important doctors on our subcommittee, Dr. Joyce of
Pennsylvania. And he will be followed by Congresswoman Debbie
Dingell of Michigan.
So you are now recognized for 5 minutes, Doctor, for your
questions.
Mr. Joyce. Thank you, Chair Eshoo and Ranking Member
Guthrie, for holding this important hearing.
As we listen to the approach that we need to be taking for
post-COVID condition, it brings to mind another medical
situation which many of us will recognize: Acute strep throat,
strep pharyngitis, when treated early, diagnosed, prescribed
penicillin, has a rapid recovery with very little sequela. But
if undiagnosed or untreated with penicillin, can go on to
develop rheumatic fever, a disorder which can affect the heart,
the brain, the joints, and the skin. Early diagnosis and
treatment is the key, but having that treatment is so
essential.
As we look to prevent COVID conditions, the post-COVID
conditions that we are discussing here today, how important is
it that, A, we look at those who have had treatment with
monoclonal antibodies to see whether or not they have gone on
to develop post-COVID syndrome? And do you see a role in
continuing to develop the necessary therapeutics so that we can
prevent post-COVID conditions?
And, Dr. Collins, I will ask you to address this first.
Dr. Collins. And that is just a great set of questions, and
very much on my mind. Yes. As part of this metacohort that we
are putting together to try to understand the causes and the
ability to prevent long COVID, we are enrolling those who have
taken part in our therapeutic trials, and many of those are on
monoclonal antibodies. We want to find out whether monoclonal
antibody treatment reduced the likelihood of that individual
going on to long COVID.
But monoclonal antibodies are not universally successful.
People still can develop symptoms from that, but we hope that
if this is actually going to provide some benefit, we could see
that.
But your point about the need ongoing for treatments and
particularly for oral agents that could be given to anybody as
soon as they get a positive viral test is very much front and
center of everything that we at NIH are trying to do right now
in collaboration with our pharmaceutical partners. In a
partnership called ACTIV, which stands for Accelerating COVID-
19 Therapeutic Interventions and Vaccines, we are running a
total of six master protocols right now on therapeutic agents
that we hope will have this benefit.
It has been frustrating. Most of the things we all had
hoped for didn't turn out to work, but there is plenty more in
the pipeline, including now some very more sophisticated
designer drugs that really interfere with the viral lifecycle,
which is what we most would like to have. So we are going to
push very hard on that, because as much as we think we would
like to drive this virus away with vaccination--and we will do
a pretty good job of that in this country--it will still be in
the world, and it will still be popping up in hotspots in our
country as well. We need to have effective therapies that keep
people out of the hospital and maybe keep them out of long
COVID downstream. It is a great point.
Mr. Joyce. Dr. Brooks, would you address this as well?
Dr. Brooks. Sure. I want to say first, the epidemiology
also gives us a clue here, which is that a paper that we both
referred to previously showed very nicely that the more severe,
the more significant the illness the person had, the greater
likelihood it was that they were going to develop long COVID.
What that means is, not only preventing long COVID--excuse me,
preventing COVID infection in the first place, but treating it
early to ameliorate the severity of that infection, if
diagnosed, really makes a difference. This is a place where
these drugs like the monoclonal antibodies have some
opportunity, and we hope that there will be other therapies
coming along soon.
Another area of research would be looking for preexposure
prophylaxis or some kind of medication you could take if you
are in a jurisdiction where the virus was circulating or had
known you had been exposed to it that you might be able to use
to prevent developing the infection if you were exposed. A
nasal spray, a single pill, all of these are things that are
out there being looked at.
So I really think whatever we can do to not only prevent
infection but treat it as early as possible and continue to
develop excellent therapeutics that lessen the severity of the
disease or prevent it from happening are going to be the way to
impact these--the number of people who develop long COVID.
Mr. Joyce. And, Dr. Brooks, I think it is so important that
you bring that into the discussion, that we need to have that
nasal spray. We need to have that ability to take an oral
medication. This is going to be the multipronged approach, our
pathway through this pandemic.
In the few seconds I have remaining, Dr. Collins, could you
please comment on--you said 273 proposals that you are looking
at at the NIH. Do any of those include HLA and preexisting
parameters that an individual might have that would predispose
them to post-COVID condition?
Dr. Collins. Another great question. Those most definitely
will be included in this metacohort. The applicants are coming
forward with particular cohorts that they already are offering
up as a means of figuring out how we can get as many possible
people involved in this study as possible. And then there is
this clinical sciences core, which is going to look at all of
the cohorts and say ``What lab tests should we do?'' And I
can't imagine that HLA won't be one of them, because of what we
know about how that plays a role in so many autoimmune
diseases.
Mr. Joyce. Again, my time has expired. But, Madam Chair,
this has been an important meeting. Thank you and Ranking
Member Guthrie for arranging this.
Ms. Eshoo. The gentleman yields back. And I appreciate
those comments, and we appreciate you.
The Chair now recognizes the gentlewoman from Michigan,
Representative Dingell, for her 5 minutes of questions.
Mrs. Dingell. Thank you, Madam Chair. And thank you,
Ranking Member Guthrie. And thank you both, Dr. Brooks and Dr.
Collins, for sitting here this long. And there are a lot more
after me in the second panel. You are angels for being here.
I am going to go back to the very beginning of this hearing
and just make that a public service ad for those that want to
get us back together and they think, you know, most people have
been vaccinated. I come from Michigan, which both Dr. Brooks
and Dr. Collins know, and almost 50 percent of the people in
Michigan have had at least one vaccination. We still, I am
told, have close to 100 people in our institution that haven't
been.
Our hospitals have been full. Our children are filling the
intensive care units. Our nurses are stressed to the limit. I
had to find the money to bury a frontline worker on Sunday who
committed suicide over COVID. So anybody who thinks that this
is over, these two can attest to what it has been like in
Michigan. And it isn't over, and we can't let down our guard.
So COVID fatigue is what leads to some of this happening. So
thank you to both of you.
A lot of us have brought this up, and I just want to build
on it. I think all of us also have heard from a lot
constituents too who had chronic fatigue. Because I can tell a
number of us have met with them. And they are worried about the
amount of money that is being put into research to have the
resources needed. I met with a group of doctors. I have met
with several groups of doctors, both at Michigan University,
feel more connected to you than single practicing primary care
doctors. And I think this is really a major issue for us right
now. The next panel is going to include patients who have
shared their written testimony, their various experiences in
going or seeking care in the primary care setting.
So, Dr. Brooks, can you expand upon what you have been
talking about? How has COVID impacted primary care physicians?
And how do we make sure--because a lot of them don't feel they
have got what they need. How do we make sure they have the
tools they need to diagnose this condition? And then, where do
they refer patients?
Dr. Brooks. Right. You know, thank you so much for also
paying attention to the healthcare workforce, because they have
been really slammed basically by this pandemic. And with long
COVID it is possible that, if large numbers of people
experience this, we are going to have another problem where we
need to help providers learn what it is, how to recognize it,
and how to refer people properly if they themselves aren't
equipped to care for it.
So first we need to build the recognition. There is nothing
more frustrating, I can say from my personal experience, of
taking care of someone and you don't know what is happening,
you can't figure it out. And one of our jobs at our agency is
to try and build that frame where you can begin to fit that
person's symptoms and signs into something that can bring at
you, ``I think I know what may help you. You need referral to
this kind of a specialist.''
It also means building those specialties. And I think we
are going to see a lot of subspecialties, some of the ones I
mentioned before, rheumatology, neurology, pulmonary medicine,
physical and rehabilitation medicine, you know, really growing
around this.
And from my experience in HIV, I can also share something,
which is maybe we focus a lot on this condition, but its
benefits echo with other conditions. What we learned around the
HIV virus benefited our knowledge around many opportunistic
infections. It benefited infectious diseases in all sorts of
different areas. Here, too, what we may learn about managing
and treating this condition will benefit those patients with
chronic fatigue and ME.
Mrs. Dingell. I just want to ask both of you in my minute
left, you are talking about the programs you have. Dr. Collins,
you have got 200-and-some proposals. Do you have the resources
you need? How do we--we know this is important. The numbers we
are seeing here we haven't seen in any other disease. By the
way, it is really real that people say, people don't believe
me. Dr. Dunn said that, people have said that to me in the
meetings I have had over the last few weeks. How do we make
sure you have what you need? And what do we as a committee need
to do to support you?
Dr. Collins. Well, I always appreciate hearing you ask that
question. I think that $1.15 billion that Congress provided in
December for us to build this very intense, large-scale study
is what we need right now. But I don't know exactly what we are
going to encounter if this goes forward.
As we have talked about in the course of this hearing, we
are going to want to institute as many clinical trials as
possible for interventions. We don't know yet exactly what
those agents will be or how large those trials will need to be.
And I can imagine if we get into that in a significant way, we
may need to find more resources and we may need to come back to
you and explain why that is.
But I have to be very grateful for what you have done for
us back in December to enable us to take this on in a very
ambitious, large-scale way, which is what the seriousness of
the problem deserves.
Dr. Brooks. If I may?
Ms. Eshoo. The gentlewoman's time has expired, I think.
Mrs. Dingell. Thank you.
Ms. Eshoo. Did Dr. Brooks--just very quickly, because we
still have plenty Members for your panel.
Dr. Brooks. All I wanted to say was that having this
hearing today is probably one of the most important first steps
in raising the awareness that we need in America. And I
encourage people to take seriously when they have someone they
know talk about this syndrome. It is real.
Ms. Eshoo. Thank you, Dr. Brooks. Exactly my intent in
identifying the issue is one that really needed to be raised up
to a congressional hearing by our subcommittee. So thank you.
Now, is the gentleman from Georgia still driving around,
Mr. Carter, our favorite pharmacist? Not with us? Going, going,
gone.
All right. Then I will recognize the gentlewoman from New
Hampshire, Ms. Kuster, for your 5 minutes of questions. Great
to see you.
Ms. Kuster. Great to see you. And thank you so much, Madam
Chair. I am so grateful for this hearing.
This past year has been an incredible challenge for
Americans all across this country. But for those who have had
COVID-19 and suffered from the lingering effects of this
disease, this past year has been even more painful. And this
discussion hits close to home for me and my family.
My wonderful niece, Laurel, who is an extraordinary
athlete--she was literally on the United States Ski Team and
was an amazing ski racer--had COVID just over a year ago today.
And she continues to have trouble with everything, even the
simplest activities of daily living. She has to choose between
taking a shower or making dinner. Otherwise, she was a 34-year-
old and previously very healthy, very competent young woman.
And I am so proud of her for hanging in there.
Everything you have talked about today, including doctors
who didn't take her seriously, has happened in her life. She
has seen countless doctors and taken endless tests, adding up
to literally thousands of dollars in out-of-pocket expenses.
Despite the tests and the preliminary research being done on
long COVID, her doctors cannot identify exactly what she is
suffering from.
As we have heard today, she is not alone. According to NIH,
more than 50 percent of COVID-19 patients experience lingering
symptoms longer than 50 days after recovering from their
initial infection. And the long-term effects are profound. So
it is critical that we have a coordinated effort here at the
Federal level. And I really appreciate, Chairwoman Eshoo, for
you hosting this important hearing.
Dr. Collins, in December 2020, Congress, we, appropriated
$1.15 billion in funding to expand research on long-term COVID
and potential therapeutics. And you have talked a lot about the
research and the metacohort. I am very curious if you have seen
any effective treatments.
I would love to put into the record a recent article from
The Atlantic about exploring what these treatments might
entail. And how will you communicate and get the word out to
the medical community so that we can alleviate the suffering of
these patients with long COVID?
Dr. Collins. Yes, it is a very appropriate question. And I
do hope everybody understands this is not just putting together
a cohort to study their symptoms and watch from a distance. We
want to initiate, as soon as possible, interventions. And the
clinical science's core of this is going to be the best
experts, including tapping a lot into the people who are
currently running these long-COVID clinics that you are going
to hear about in the next panel to see what ideas are out
there.
We will, however, want to ensure that, if we are going to
test a therapeutic, that we do it in a fashion that is
rigorous, that is well powered, that is placebo-controlled so
we really will know whether it works or not, because you have
so much variability in the course of long COVID. Some people
seem to spontaneously get better over a few months, some people
don't. And if the only way you are going to really know if your
intervention work is if you design the trial accordingly, we
will be doing that.
I mentioned earlier we are already running a trial about
whether anticoagulants in the convalescent period might be
beneficial and certainly some ideas about immunosuppressants
that could be tried as well. Beyond that, I haven't see the
article you mentioned in The Atlantic. There are ideas floating
around, but we are going to need to prioritize them about which
are the most promising, make sure we have the appropriate
clinical trials and master protocols put together, and then we
are going to go and see what works as soon as possible to try
to come up with things that we can advertise to the clinicians
around the country as here is new information you might want to
know. CDC will help us a lot with that because of their
connections with the clinical community out there.
Ms. Kuster. And I am curious, as well, not just
interventions with therapeutics or medication but also
treatment. This article related to breathing techniques that
might be helpful. Have you heard about any other types of
treatments that don't entail intervention but just entail
helping the person live with the situation?
Dr. Collins. Yes. Certainly, this kind of pulmonary
rehabilitation, which has been used for other conditions, does
seem to provide some benefit to patients, cardiac
rehabilitation for people who are primarily suffering from
things like palpitations and fatigue. And also interventions to
help with the brain fog, similar to what has been done for
people with concussions, do seem to provide benefit.
Again, I think you are going to hear from the people
running the post-COVID clinic in the next panel about things
that they have tried. But it is still kind of early days. We
are all just trying to see what could we try and did it work.
And you want the most rigorous, large-scale data as soon as
possible. That is what I think we can contribute with this
metacohort.
Ms. Kuster. Well, my time is up. But I thank you all for
everything you are doing to get to the bottom of this.
And I yield back.
Ms. Eshoo. The gentlewoman yields back.
I am always struck by the term ``novel coronavirus.'' We
keep learning. There is a reason it is called novel; we keep
learning every day. And hopefully, today's hearing advances
that learning and how we can apply it best.
I just want to say, we don't have any more Republican
members of our committee in the lineup, so I don't want anyone
to think that I am skipping over them. But we will continue on
and it will just be from our side of the aisle, unless someone
shows up that didn't have the opportunity to question.
So it is a pleasure to recognize the gentlewoman from
Illinois, Ms. Kelly, for her 5 minutes of questions.
Ms. Kelly. Thank you so much, Madam Chair.
Dr. Collins, when we talk about long COVID our constituents
are saying that they are no longer able to work due to fatigue.
How do we help employers understand the plight of their
employees' experience in long COVID to ensure they are not
discriminated against in the workforce and are able to remain
productive citizens if they chose to do so? And thank you for
being here.
Dr. Collins. Thank you for the question. It is really
important that we figure out ways to support people who are
going through this prolonged period of fatigue that makes it
impossible for them to work full time or maybe even to work at
all. And we know that does happen to a substantial number of
individuals with long COVID. And that means we need to figure
out how to get this information into the hands of Social
Security, for instance, in terms of disability claims.
By the way, it also means we need to be sure we have a good
connection with CMS so that the coverage for medical expenses
doesn't end up bankrupting individuals who are already going to
be in a tough place because of this illness. Both CDC and NIH
have been working closely with CMS on that issue aiming to try
to come up with the usual thing you need, which is an ICD-10
code so that these kinds of reimbursements will begin to take
place more readily.
Again, I think employers generally are not going to be very
sympathetic unless they are totally convinced that this is
something that is medically established. So the docs are going
to have a lot to do with that, which is why what we have been
talking about a minute ago in terms of getting information to
clinicians so that they don't brush these symptoms off as if it
was something not so serious is going to be critical.
But I should ask Dr. Brooks also to address your question,
because I think the connection CDC has in here is really
important with employers, with Social Security.
Dr. Brooks. Thanks, Dr. Collins. And thanks,
Representative. That is a really insightful question. We spend
a lot of time, first of all, working with the employment
community to show that people who may be disabled--and I am not
going to say that people with this condition are disabled--but
people who are challenged by medical illness are still able to
work and to work with them to find ways to help them work.
We have got a year of experience living on Zoom--as we are
doing right this minute--and we are finding ways to help people
do their job and be gainfully and meaningfully employed outside
of the standard workplace.
And then, as Dr. Collins was mentioning, for people who are
down for the count, we have got to make sure that we can
clarify for people this is a real condition that people are
living with and to take the symptoms seriously. This is one of
the driving forces for us to get these interim guidelines
together so we can begin to provide clinicians with a way to
describe what is going on.
I hope you will hear this afternoon from our colleagues at
UCSF and Yale some of the challenges they may have faced in
terms of filling out disability claims or off-work claims and
the ways that they are working to address that. But it is
critical that people who have been affected by this disease are
able to be taken care of and, if that means they are unable to
work for a period of time, that we are able to support them
then.
Ms. Kelly. Thank you so much. And I know my other
colleagues have been waiting a long time, so I will just ask
one question. Thank you so much.
Ms. Eshoo. The gentlewoman yields back. That is so generous
of you.
I am going to go back to the gentleman in the car. I called
you our favorite pharmacist, the gentleman from Georgia, Mr.
Carter, for your 5 minutes of questions.
Mr. Carter. Thank you, Madam Chair. I appreciate this. And
thank you for bearing with me.
Dr. Collins and Dr. Brooks, I thank both of you for being
here. This is extremely important.
I have got a staffer who has been diagnosed with long
COVID. And that staffer has been--that individual has suffered
from severe anxiety, fatigue, long-lasting loss of smell and
taste, and these are very serious issues, and I am very
concerned. And concerned, obviously, because it is someone
close to me.
I wanted to ask you--the staffer in my office, she says
that many of her long-COVID symptoms dissipated after she
received the vaccine. Is the CDC or the NIH aware of any reason
the vaccine may help with long-COVID symptoms? Dr. Brooks?
Dr. Brooks. That is a great question. Thank you. And I will
say these were fascinating reports when they began to come out.
We have talked a little bit about this, so I don't want to go
over all of that territory, other than to say there are some
emerging research data that suggests there may be something
there. But we have really got to look at it more closely.
The mechanisms are--there are multiple things that could be
going on. I think the ones that I like the most are the idea
that the vaccine is bringing benefit in terms of either
controlling this, if it is an ongoing active infection that we
are not recognizing, or doing something to get the immune
system back on track to where it should have been.
Also, this is a great reason for people who are having
post-COVID to get vaccinated, if they haven't been vaccinated
already. We can't guarantee that this positive experience some
people have reported is one that everyone will have, but I
certainly hope it would bring people off the sidelines to get
vaccinated if they are hesitant.
Mr. Carter. That is great.
Dr. Collins, are you aware of any studies that are being
done about this?
Dr. Collins. Yes. There is one small study that has been
published as a peer review, but it is 44 individuals where
there was overall a small improvement in those who got
vaccinated versus those who didn't. But also, there is a
patient support group called Survivor Corps, and they did a
survey, I think of more than 500 individuals who had had long
COVID, got vaccinated. Forty percent of them reported some
improvement, which was encouraging to hear. And relatively few
reported the opposite, of having a worsening of their symptoms.
What exactly that means as far as the mechanism, I am sure
you are wondering about that too because we all are. Does that
mean that those individuals with long COVID still have a low-
level viral infection that we haven't been able to quite
discover and that the vaccine basically gives their immune
system the kick it needs in order to take care of that residual
virus? Or is it that they have an autoimmune condition already
because of that COVID infection and the vaccine interrupts with
that? We don't know. Those are theories.
Mr. Carter. I am going to kind of go off script here,
because this is something that--and I never try to get personal
in any of these hearings, but I have got a dear friend who is
suffering right now with psychological, mental problems as a
result of COVID. What is going on with that? Dr. Collins, do
you know? I mean, he has had to be admitted, and I am just
worried to death about him.
Dr. Collins. I am very worried about that because we are
seeing instances--first of all, let me say anxiety and
depression is a very common feature of long COVID. But there
are instances of actual induction of new psychoses in
individuals who previously were normally functioning, who
actually fall really into a much more serious psychiatric
illness. We assume this must be some way in which this virus
has interfered with the function of the brain, maybe by
affecting a vascular system or some other means of altering the
way in which the brain normally works. But we have so little
information right now about what that actual anatomic mechanism
might be. And that is something we have to study intensively.
But you are so right, this is a big part of long COVID, is
the mental health consequences. We shouldn't just talk about
shortness of breath and palpitations. We have got to talk about
the mental health issues.
Mr. Carter. Dr. Brooks, any comment on that?
Dr. Brooks. I completely agree that mental health is often
the last breath and a discussion of what we need to address
when often in a condition like this it needs to be the first
thing we bring to the front. I hope your friend gets the care
they need. And I am very, very sorry to hear how ill they are.
Mr. Carter. I tell you, it is just obvious--I am very, very
concerned. And I just--has the vaccine--to be quite honest with
you, I don't know whether he has gotten the vaccine or not. Is
this another instant if he was to get the vaccine? Has it shown
improvement for these people?
Dr. Brooks. I think from what Dr. Collins described, there
is a possibility it will help, and there is not a lot of
indication that it is going to do harm. And we know that in the
long run it will protect him against the possibility of
reinfection. I would do it.
Dr. Collins. Yes, I am with you.
Mr. Carter. Good.
OK. Madam Chair, thank you very much. I appreciate it. And
I yield back.
Ms. Eshoo. The gentleman yields back.
It is a pleasure to recognize the gentlewoman from
California, Ms. Barragan, followed by Representative Craig from
Minnesota.
Ms. Barragan. Thank you, Madam Chairwoman.
The USC school--the Keck Medicine is reporting that 1 out
of every 10 COVID-19 patients at Keck Medicine of USC is a
long-hauler. And for them, they say that this statistic is
pretty nationwide, about 10 percent of COVID-19 patients have
these long-haul symptoms. At Keck, they say most of the long-
haulers are between the ages of 20 and 40 years old, which is
quite remarkable when you think these are young people, many of
them maybe healthy.
Is there any data or information that we have about why
maybe in southern California, I don't know how common it is,
that it is impacting younger people between 20 and 40 more than
others?
Dr. Brooks. If you want, I can start with that, Dr.
Collins.
Dr. Collins. Sure.
Dr. Brooks. And, Congresswoman, thank you much for that
important question. Let me point out one thing that is
important to have in the back of your mind, is that among the
persons affected by COVID in this country, the largest numbers
of new infections are among people in that age group, 18 to 39.
So it is not a surprise necessarily that they would be
overrepresented in the persons who are experiencing post COVID
as well.
Having said that, I still think it merits close attention,
because it is an unusual signal. And I hope folks are, you
know, going to begin focusing more on the age differences as
well as some of the others that we have raised before.
Dr. Collins. Yes, I agree with that. When you look at what
is the likelihood that somebody who was just diagnosed with
COVID-19 is going to go on to long COVID, it looks as if it is
a bit higher for older people. But on the other hand, there are
more young people getting infected. So if you go through the
mathematics, you can see why it is that long COVID seems to be
particularly prominent now in younger people, who may not have
been very sick at all with the acute infection. Some of them
had minimal symptoms but now are turning up with this.
That 10 percent number that USC is reporting, that is
pretty typical for what a lot of the studies are showing,
although there is quite a lot of variability, some as high as
30 percent, some lower than 10. One of the things we really
need to get a better fix on is what is that percentage when you
have a very large study and you can control for all of the
other correlates that might play a role there.
But, you know, here we are having this hearing about is
this really an important issue. Think about this for a minute:
We have got 32 million people who have been diagnosed with the
acute infection of SARS-CoV-2, COVID-19. Let's say 10 percent
is right. That means there are 3 million people who are going
to be affected with this or already are and whose long-term
course is uncertain and may very well end up being people with
chronic illnesses. That is why this is such a serious issue.
That is why I am grateful to you all on this subcommittee
and in the Congress for taking this so seriously and giving us
the opportunity to throw everything we have got at it to try to
understand this and try to interfere with the diabolical nature
of this virus to not only get you once in an acute illness but
also get you again as you think you are getting better and
maybe don't. So thank you for the recognition of that. I can't
overstate how serious this situation is for the health of our
Nation.
Dr. Brooks. Let me add, if I may, just one thing. This is a
great opportunity to remind young people they are not immune to
this, right? This is really the audience you want to reach with
``vaccination is something you should strongly consider, yhis
affects people like you.''
Ms. Barragan. Right. And that is a good reminder,
gentlemen, about what we are hearing and read about these days,
that more and more Americans are not going to get their second
dose because they are worried about any side effects that may
last a day or two on, you know, a headache or aches and pains.
And so this sounds like the alternative of a possible long-term
impact is going to be a lot worse. And so I am encouraging
those in our community to go get that second shot if they have
not yet.
You know, I represent a district that is almost 90 percent
Latino, African American. We have been hit super hard by COVID-
19. Many are low income, many don't have access to services
they need, maybe they don't have full access to healthcare.
Dr. Brooks, you have already touched on how the social
determinants of health affect people in underserved communities
who have long COVID. And I know that the CDC is very interested
in addressing social determinants, not only regarding COVID but
also more broadly. Dr. Brooks, do you believe that Congress
should be doing more to address social determinants of health,
including fully funding the CDC's social determinants of health
program as a strategy to help those most impacted by the
pandemic?
Dr. Brooks. I agree with you completely. The social
determinants of health are critical underlying causes for what
may be driving some of the things that we are seeing.
Unfortunately, that is an area, the funding part, that is a
little out of my expertise. But what I want to do is I will
take that back to our folks and get an answer for you. I want
to make sure we address the question you are answer--you are
raising, rather.
Ms. Barragan. Fantastic. Thank you.
With that, Madam Chairwoman, I yield back.
Ms. Eshoo. The gentlewoman yields back.
A pleasure to recognize the gentlewoman from Minnesota,
Congresswoman Craig, followed by another one of our outstanding
doctors from the State of Washington, Congresswoman Schrier.
So, Angie, take it away. You have 5 minutes.
Ms. Craig. Thank you so much, Chairwoman.
It is really an honor to be here to talk to both you, Dr.
Collins, and Dr. Brooks.
We have heard you both share that long COVID is such a
complex disease that we don't know so much about it at this
point. So many different symptoms that involve many different
organ systems, from the lungs, to the heart, to the brain. We
know that these complex conditions often require advanced and
multidisciplinary care that might only be available at some
larger institutions.
In my home State of Minnesota, of course, we are fortunate
to have world-class facilities that help people suffering from
long COVID return to--to help them try to return to that pre-
COVID life. Programs such as the COVID Activity Rehabilitation
Program at the Mayo Clinic provide comprehensive rehabilitation
services and mental health support.
Dr. Brooks, with such complexities, with such
multidisciplinary medical care needed, where should my
constituents start in terms of the setting that they are
looking for to receive, generally seeking care for long COVID?
Dr. Brooks. You know, you raise a really important
question, because in an evolving disease like this, we really
want to get people to the right place as soon as we can so they
get the appropriate care.
As before, I would recommend that people first seek care
with their primary care physician. It is our duty to raise
awareness in the frontline provider community that this is a
real condition, that it exists, it may be misunderstood, but to
recognize that there is something there, and to use that as a
cue to seek referral to a specialty center.
Now, for the time being, we may have to work in that
system, but I hope one day we are able to move to a system like
we used for HIV now, another complex disease, but where we were
able to diffuse the knowledge and actually bring it to people
further away from the centers of academia.
Ms. Craig. Dr. Brooks, just stay with me for one more
minute, what is the CDC doing to help inform those primary care
providers on long COVID and to ensure that those appropriate
services are available?
Dr. Brooks. So we have regular webinars and phone calls to
which we invite clinicians and care providers, and actually
pretty much anyone is welcome, but it is intended for that
audience to bring them up to speed about the latest knowledge
around COVID-19, but also in this case long COVID.
In addition, we have drafted interim guidelines to assist
in the early diagnosis, recognition, management, and referral
to services and how to do that and also how to help patients
engage with support groups that may be out there and can offer
some other options for them.
Ms. Craig. Thank you so much.
I want to ask Dr. Collins the next question. It is nice to
see you again, and thank you for the great tour of NIH before
COVID.
The majority of NIH funding flows through academic medical
centers who are often, obviously, leading the way in addressing
long COVID.What is happening at NIH or other Federal agencies
to learn from these academic medical centers to assist you in
the development of care models for long COVID?
Dr. Collins. Well, they are most certainly critical
partners for us, and you will hear from a couple of
representatives in the next panel about how academic centers
have tried to pull together the kind of multidisciplinary care
that is necessary for long COVID. One of the things I worry
about, relative to your earlier question, is if people start
bouncing around from specialist to specialist and nobodyis
actually coordinating the big picture, then long COVID is not
going to be well taken care of because almost nobody with long
COVID has one symptom or one organ that needs to be attended
to. It is multicomponent. And that is where the academic
centers trying to put together these long-COVID clinics that
have access to multiple expertise is going to be really
important.
Those 273 applications I mentioned that we are reviewing
right now, a very large number of them are from academic
centers that do in fact bring their expertise and their hopes
and dreams of helping with this situation as they have been our
partners in many other situations. They are going to be that
here as well, although they have to show what they can do. We
won't be able to fund all of them, not with that number, but we
are going to build on that expertise as well as bringing in
other kinds of insights from small businesses and from other
government agencies like CDC and FDA and really try to bring,
as we have done in therapeutics and vaccines, all of the
players around the same table to solve a really hard problem.
Ms. Craig. Well, I just want to say thank you to both of
you, Dr. Collins and Brooks, for a grateful American public. I
know it has been incredibly difficult. Thank you for your
leadership during these difficult times.
With that, Madam Chair, I will yield back.
Ms. Eshoo. The gentlewoman yields back.
The Chair is very pleased to recognize another one of our
outstanding doctors on the committee, such value added since
she has come on: Dr. Schrier, from the State of Washington. You
are recognized for 5 minutes.
Ms. Schrier. Thank you for that kind introduction, Madam
Chair.
And thank you, Dr. Collins and Dr. Brooks, for joining us
today and giving your insights about what we know about long
COVID and what we don't. It will not surprise my colleagues
that, as a pediatrician and a mom, I am going to focus on
children today. Because we have talked for over a year about
how we are so fortunate that children are only minimally
affected by COVID-19, that it is changing a bit with the
B.1.1.7 variant, the fact that adults with no symptoms or very
mild symptoms can still have pretty devastating and life-
altering COVID symptoms really begs the question about
children's risks for long COVID and whether we are a bit too
complacent about how we are managing their risk. And I am
thinking about schools and camps.
So my first question is for Dr. Brooks. Could you just
quickly list, just based on what you know so far--and I know it
is limited--what are some of the ways that long COVID seems to
present in children, just so we have our radar up?
Dr. Brooks. Right. Right. So the data that I am aware of,
for some of the symptoms are the ones you see in adults as you
would expect in, particularly, pulmonary conditions, persistent
shortness of breath, maybe cough, as well as persistent
fatigue. There is also some evidence that the experience--what
is called a brain fog, but it is probably some issue--probably
neurocognitive in nature, and it is important for kids when
they are growing and developing that we understand what is
happening there because we don't want that to impair their
ability to learn and grow properly.
Those would be the main symptoms that I am most aware of to
look for.
Ms. Schrier. And those are so interesting because we do see
symptoms like that frequently, and I will get back to this, but
it may raise the question of whether part of the workup now
becomes titers in those kids. Now, both of you--I will start
with Dr. Collins, you have said many times and we doctors on
the call have said that the best way to prevent long COVID is
to get vaccinated. And I have to note that Pfizer submitted a
request for emergency use authorization for children 12 to 15
years old several weeks ago.
Do you have any idea why we are not moving as quickly with
that approval as we did for adults? Because we had that, you
know, out to the public, I think, within a week or so. And I,
as a mom of a 12-year-old, and I know moms everywhere are
wondering, especially with long COVID, when can our kids get
vaccinated?
Dr. Collins. Very good question, Dr. Schrier. And I, as a
grandfather of a 14-year-old, am wondering the same question.
So, yes, I know Pfizer did submit their data and is seeking EUA
for kids 12 to 15. FDA has been looking at it. I think, to be
fair, it took FDA 2 weeks with the adult data before they
convened their advisory committee and had the public
discussion, but it has been a little longer than that.
I don't have insight into what is happening in the internal
workings of the FDA. I am sure they have been a little busy
with this J&J circumstance, but I am hopeful, as you are, that
they will come forward pretty soon with a rendering of a
judgment here, and they will have to convene their public
committee so that everybody gets to look at this. Obviously,
everybody wants to be sure, if we are talking about kids, that
there's no new safety concerns there. But, yes, wouldn't it be
great if we could do that and not have to wait till the fall
when school starts up, to get started now this summer
immunizing those high school kids and middle school kids, too?
I would love it.
Ms. Schrier. It sure would be nice. Summer camp is coming
up. So I have another question for you because we are doing our
own research here. Israel is a country that has medical records
on everybody from the day they are born. They had high rates of
COVID like we did. They also now have astounding rates of
immunization. I am just wondering if we are kind of
collaborating with Israel on the question of long COVID.
Dr. Brooks, sorry. Dr. Brooks.
Dr. Brooks. Sure, yes. We certainly follow the Israeli
literature closely because the benefit that you just described
are allowing them to pour out new information to share with
people is very valuable. We also work with the World Health
Organization on the long COVID effort, and it is probably
primarily through that relationship with WHO, who are also very
vested in this because this is a problem seen everywhere in the
world. I just want to mention that this is not unique to
America. It makes common sense, but it is being seen in every
country pretty much.
So we--I have spoken to Israeli colleagues through that
relationship and also a panel that is convened regularly by the
European CDC where they bring leading CDCs from other countries
together. Israel is always in that group. You remind me that I
am going to want to talk about long COVID in our meeting coming
up shortly.
Ms. Schrier. Well, thank you. Thank you both for this
really important meeting and your attention to it. Thank you.
I yield back.
Ms. Eshoo. The gentlewoman yields back.
The next two Members that I will recognize, first, the
gentlewoman from Massachusetts--again, high value added, new
member of our subcommittee, we are thrilled to have her--
Congressman Trahan. You are recognized for 5 minutes.
Can you hear me?
Mrs. Trahan. Thank you, Chairwoman Eshoo. Yes, can you hear
me?
Ms. Eshoo. I can.
Mrs. Trahan. OK. Terrific. Well, thank you, Chairwoman
Eshoo, for holding this illuminating and important hearing. And
my thanks to Drs. Collins and Brooks. You know, I want to just
spend a minute elevating the story of one of my constituents,
Lauren Nichols. She is a 33-year-old former athlete----
Ms. Eshoo. Can I--excuse me for interrupting. We can't see
you. I don't know if it is just my screen, or is it everyone
else's? We can hear you, though.
Oh, there you are. Good.
Dr. Collins. I think it is a weak signal.
Mrs. Trahan. All right. OK. Sorry about that. So Lauren is
a 33-year-old former athlete, runner, and hiker from
Massachusetts who has been suffering from long COVID since
March of last year. She first developed the symptoms on March
10 of 2020, and her initial symptoms were severe neurological
and gastrointestinal issues, which then escalated to severe
shortness of breath a few days later. When Lauren tried to get
a COVID test through her primary care doctor, the answer she
received was not at all encouraging. In fact, I, quote: ``You
are young, and you will be just fine if you contract COVID.''
And she was denied a test. But as her symptoms worsened,
Lauren sought a second medical opinion where she, again, was
met with skepticism from a physician who did not believe the
severity of her gastrointestinal issues or that they were even
related to COVID. But due to her own advocacy, Lauren
eventually received a COVID test and was diagnosed with the
virus.
But in the weeks that followed, Lauren developed pneumonia,
painful colitis, and due to the lack of support from those she
sought medical help from, she developed depression and became
suicidal. Months later, she developed eye shingles and is now
visually impaired. She started to have seizures and even a
stroke, all due to the lingering effects of COVID-19. Although,
she is insured, Lauren has spent more than $12,000 out of
pocket for her [inaudible]. Long-COVID patient developed
fatigue or MECSF, which has been raised by [inaudible]. Dr.
Anthony Fauci last summer stated that many COVID-19 [inaudible]
patients [inaudible] significantly increasing the number of
those patients across our country.
So, Dr. Collins, historically research into clinical trials
and treatments for MECSF have gone underfunded at NIH, leaving
many patients to suffer physically [inaudible].
Ms. Eshoo. Your voice is--Lori, can you restate your
question?
Mrs. Trahan. [inaudible] Congress appropriated $1.15
million for research for the agency, but heading to DC.
So, Dr. Collins, this question is for you. As NIH leverages
its research on MECSF to better understand the intersection of
MECSF and COVID-19 syndrome [inaudible]. When can patients like
Lauren and so many others expect developed from COVID? Did that
not come through? That question not come through?
Ms. Eshoo. We are having a problem with your audio. It is
really breaking up in the car.
Dr. Collins, did you get the gist of the question?
Dr. Collins. I think I got the general gist, particularly
asking about a CSF or MECSF and the relationship to long COVID
and the need for research on both of them, and I agree with
that. I have been very concerned for several years about the
lack of understanding of MECSF and what the mechanism is that
causes individuals to suffer from this oftentimes years of
fatigue that are sufficiently severe to keep people almost
bedridden.
We do have a lot more research going on on that. We funded
no less than four centers of excellence to work on CSF. Our own
intramural program at NIH has a big program bringing patients
to our clinical center for intense study with CSF, and the same
investigators are now studying long COVID with the same
mindset.
So, if there is an overlap between this, I think we are
going to discover what that might be. And my hope would be that
the fact that we are now able to put a lot of resources into
studying the long COVID circumstance where we know what the
inciting agent was--we know what the virus was--we should learn
something that will spill over in a useful way into our
understanding of CSF, and we will be able to offer something
more successful to those individuals who have suffered a lot
for much too long.
Mrs. Trahan. Thank you, Dr. Collins, and I appreciate the
committee's patience. I apologize for the in and out and the
weak signal. I will submit my question for Dr. Brooks--I will
submit it for the record. Thank you.
I yield back.
Ms. Eshoo. Wonderful. Thank you. We certainly understand,
you know, all of the glitches that are possible and sometimes
probable out there, but we want to make sure that we got your
question in and submit--all Members can obviously submit their
written questions to our witnesses.
Pleasure to recognize the gentlewoman from Texas, Mrs.
Fletcher, for your 5 minutes of questions. Great to see you.
Thanks for your patience.
Mrs. Fletcher. Great to see you, and thank you so much for
holding this hearing, Chairwoman Eshoo. This is really
critical, as so many of my colleagues have said before me
today, and I am looking forward to our next panel as well. But
I think that our witnesses in this first panel have really been
excellent in making it abundantly clear that long-term COVID,
long COVID, is real. It can be debilitating. I really
appreciate it. The answers just now about comparisons with CSF,
that is certainly something that we have experienced here in
our community, a lot of folks and those challenges, but, you
know, I am very concerned, as I think has been made clear
today, that once we get past, you know, this pandemic or get to
the next phase of this pandemic and the majority of people are
vaccinated, we are still going to have a health crisis on our
hands. Certainly that has been made clear, also my colleague
Debbie Dingell mentioning the status of things in Michigan,
certainly we still have our challenges down here in Houston and
in Texas.
So I wanted to just use the time that I have to see about--
to follow up on sort of two things. Dr. Collins, in your
testimony today, both written and in response to questions from
some other colleagues, you talk about individuals facing
skepticism about what they are experiencing. And I think, as
some other people have mentioned, there are also real
challenges to identifying as a patient, you know, whether these
are symptoms, what to expect, how to properly categorize what
you are experiencing.
So I am wondering, actually, if both of you could just
touch on a little bit more anything you haven't had a chance to
say about how we educate the public about how to recognize
symptoms and how to access care. And, obviously, I am
particularly worried about those areas where there may not be a
COVID-19 long-hauler clinic.
So really understanding what patients can do and how they
can evaluate and get access to care and also how health workers
are equipped with the resources and training to deal with
those? So I would love your thoughts on those issues.
Dr. Collins. Well, first, I would say this hearing is a
good step in the right direction, and so thanks to the
leadership for putting this together, and I hope, because the
press tends to listen to these things, that this will provide
another opportunity for people to be informed about long COVID.
It is a real and serious condition.
And let me just turn, though, now to Dr. Brooks because CDC
is in such a critical place in terms of trying to both do the
public education and the provider education so that people
aren't faced with this terrible circumstance of not only having
a terrible condition but not being believed that you have
anything wrong with you.
Dr. Brooks. Yes. Thanks, Dr. Collins, and especially,
Congresswoman, for the question, the insight here. You know,
one of the things we are doing first is trying to make sure
that clinicians are aware that this exists and that it is real
and how to recognize it. And we are doing that through a
variety of different means of webinars, phone calls, and
developing interim guidance. At the same time, we want to make
sure patients are aware that, if they have something, to seek
care.
We want them to seek primary care first to make sure that
it isn't something else. There are a lot of things that may
look like some of these early symptoms, and those can be taken
care of, but if it is not and they are concerned that it could
be long COVID, then to refer them to the proper place to get
that kind of care. Although it is primarily centered in urban
and academic centers presently, as we learn more I fully expect
that it will be basic care for people with long COVID. We will
be moving out into community health centers, secondary and
tertiary hospital centers so that people will have access to
the services that they need, but the burden question is a
burning one: 32 million Americans so far have been infected, as
Dr. Collins referenced. Even if a small percentage of them, 10
percent, have this, that is lots of people. That is millions of
people. So we need to be prepared that this will be with us for
a long time. It could be substantial.
Mrs. Fletcher. Well, thank you so much for your insights
and for your testimony here today. I really appreciate the
emphasis that you are placing on this and on communicating with
our communities, and certainly we here in Houston and Harris
County are very interested in being a part of the research and
the work that you are doing. And I know there is a lot of
collaboration going on from folks here in the Texas Medical
Center and beyond, you know, working hard to try to address
these issues.
And, you know, the one other thing that I would love to
just hear you touch on if either of you have additional
thoughts, Dr. Collins, you mentioned earlier about the ARPA-H
proposal and, in the short time we have left, if you have any
additional thoughts you haven't shared on that. I think it is
really exciting.
Dr. Collins. Well, I do, too, as you might have guessed
from my earlier comment. This is an opportunity to take some of
the lessons that we have learned, particularly with COVID-19,
but going back to other things we have done that have been out
of the order in terms of really rapid progress in areas that
require a lot of different disciplines to get together and move
forward in a fashion that has been pioneered by DARPA and the
Defense Department, of which we could bring to the health arena
with great benefit.
So I am very excited if this is, in fact, embraced by the
Congress and the appropriations process that we are getting
into for fiscal year 2022, if we could stand up this new unit
at NIH, that would be doing some pretty breathtaking things
across the board in many different areas--not just infectious
diseases, but other things as well. So thanks for asking.
Mrs. Fletcher. Well, thank you so much. I see I have gone
over my time. It is very exciting. I look forward to working
with you and Chairwoman Eshoo on these matters.
Chairwoman, thank you so much for allowing me this time and
for holding this hearing.
Ms. Eshoo. Absolutely. It is a pleasure. We have two
Members that are waiving on to our subcommittee, and we always
welcome them and any Member that wants to join us from the full
committee to waive on, and they will be the last two that I
know of to question this panel. So, Drs. Collins and Brooks,
you are going to have your late lunch shortly.
So, at this time, I would like to recognize the gentlewoman
from Illinois, Ms. Schakowsky, who very often waives on, and we
are always happy to have her. You have 5 minutes.
Ms. Schakowsky. Thank you so much, Madam Chair, for
allowing me to be here.
I am--first of all, just want to thank both Dr. Brooks and
Dr. Collins. Makes me so proud that within our government and
our public health system and our scientists are doing so much.
I really appreciated that when Dr. Fauci got his vaccine, he
called it the NIH vaccine, underscoring what we do together as
a country to support your wonderful work. So thank you for
that.
But I have to tell you that I am very worried. You know, we
have right now vaccines and therapeutics that are affordable
because we are doing that during what we call the COVID crisis,
but after that, for the long COVID, are people going to be able
to afford it? Are people going to be able to get the help they
need?
I know you have talked about just proving that they are
sick in the first place is a challenge, but let's say that they
are. We have seen through COVID the disparities, communities of
color, individuals who are more infected, people in lower-
income communities. We have already seen Pfizer report to their
stockholders and investors that, oh, this is going to be a good
year because we are going to have these vaccines boosters every
year for people, and we are going to--so once this designated
timeframe, it has passed, are people who have long COVID going
to be able to not only access the doctors and get the treatment
but be able to afford this?
I am very worried about this and Big Pharma's proclivity to
profit on what is happening right now.
Dr. Collins. So I wish I could get my crystal ball to be a
little less cloudy here as we try to look forward where we
might be in 6 or 9 months. I think in 6 or 9 months, we will
have a better understanding of what the actual mechanism is of
long COVID. Maybe that is a little early to be really, really
clear, but I think we will have some pretty good clues, and
that will lead us in the direction of treatments, but then we
will have to figure out do they actually work in rigorous
trials.
So let's say a year from now, we might begin to really get
a sense of what is optimum medical management of people
suffering from long COVID and who is going to pay for it. We
have already started that conversation with CMS because, as you
know, a lot of what happens with third-party payment follows
CMS's guidelines for both Medicare and Medicaid, and I think
that is going to be critical going forward. Because you can
imagine the tragedy that will ensue if we come up with a way to
treat long COVID, but it happens to be a fairly expensive agent
and it is not covered by third parties, then we are hitting
people with one more terrible outcome. We can't let that
happen.
I know CDC has worked closely also with CMS in this space,
and this is a place where our three agencies plus FDA are going
to need to be in lockstep to make sure we don't stumble with
the ability to find things that are going to help people that
are affordable.
Ms. Schakowsky. Well, I think what you can do to help us is
to identify the symptoms that are almost certainly connected to
COVID, because I think that there may be some resistance to
even identify something as COVID-related.
Dr. Collins. Yes. I think that is right, and I think CDC is
very much trying to push into that space of saying what really
is our case definition here that ought to be reimbursed.
Dr. Brooks. I have to agree. Establishing case definition
is fundamental to the issues that you are talking about,
Congresswoman.
Ms. Schakowsky. And that is what you folks do, right?
Dr. Brooks. Yes.
Ms. Schakowsky. OK. Well, I am just so grateful for all of
the work that has been done in the public sector by people like
you who are so dedicated, and I just appreciate it, but, you
know, women, by the way--and we are going to hear some
testimony and we have had testimony at this committee--are
often also underlistened to----
Dr. Brooks. Oh, yes.
Ms. Schakowsky [continuing]. When it comes to health
issues. So it is an issue for women as well to make sure that
we are accepted for the treatments that we need and that they
are available and affordable. So thank you once again.
And I yield back.
Ms. Eshoo. The gentlewoman yields back. And I would say
back to the gentlewoman, how about just across the board
relative to women and speaking and really being paid attention
to? We push forward. We are changing that every day.
It is now a pleasure to recognize the gentleman from
Pennsylvania, a great friend, chairman of one of our--another
very important subcommittees at Energy and Commerce,
Communications and Technology, and he has been with us since
the gavel went down this morning. So thank you, Mr. Doyle, and
you have 5 full minutes. I won't hammer the way you do. How is
that?
Mr. Doyle. Madam Chair, I want to thank you so much for
holding this hearing and for allowing me to waive on, and it is
great to see Dr. Collins and Dr. Brooks here and the great work
that they do.
Peter Welch brought up a good point about being able to
diagnose and having tools to diagnose long hauler. I have--one
of my sons is a long-hauler going on his fourth month since he
was infected. Young, athletic type, wrestler, body
weightlifter, I mean, just in perfect physical condition, and
to see how debilitated he has become. He just took disability
from his job, and he works in pharma, and he has got a great
job and two of our grandkids, and it has been tough to watch.
But because he is a COVID long-hauler, I have been in touch
with a long-COVID researcher in California, Dr. Bruce
Patterson, who is the former medical director of the Diagnostic
Virology at Stanford, and Dr. Patterson has a database of long-
COVID patients and blood samples of some 4,500 now. Here is an
article entitled ``Immune-Based Prediction of COVID-19 Severity
and Chronicity Decoded Using Machine Learning,'' which was just
accepted by peer review, and it is going to be published in one
of the immunology journals soon.
And with his model, he has been able to accurately predict
long-haulers through the 14 cytokines related to COVID using a
simple blood sample from a patient. I hope this is something
that NIH is interested in, and I guess my question is, how do
we make sure that when we have researchers that have, you know,
breakthroughs like this that it is widely disseminated and that
NIH, you know, and the rest of the medical community is aware
of it?
Dr. Collins. Well, Congressman, it does sound like a very
interesting study, and I would hope, yes--the way in which the
information gets disseminated is exactly what Dr. Patterson is
getting ready to do, is to publish this in the peer-reviewed
literature. All of us who are concerned about COVID and
especially long COVID are avidly reading the journals daily. If
you could see my desk, you would see a pile of published
manuscripts that is about 2 feet high that I am kind of
constantly looking at for what is the new idea. Yes, tell Dr.
Patterson, if he is listening, send me a preprint. I want to
see what this is with the cytokine that might be a biomarker
indicating who is at the greatest risk in something about
mechanism. That is the kind of thing we are looking for.
Mr. Doyle. I mentioned that I did introduce Dr. Patterson
to Dr. Gary Gibbons. We put him in touch with him, and I just
wanted to draw attention to it because he has been doing a lot
of good work in this field.
I got to ask you, my colleague Dr. Joyce I thought brought
up a great point on, you know, an ounce of prevention being
worth a pound of cure, and that is some of these therapeutics
that we can use. Not everyone is going to take this vaccine. We
know we have people out there that just aren't going to get the
vaccine, but they may get COVID. And one of the ways to make
sure they are not long-haulers is to get them some sort of
therapeutic treatment the minute they get the disease. I have
heard from a lot of doctors in my district and patients about a
therapy that is not a novel therapy but one that has been
around for quite some time and has an excellent safety profile,
and that is ivermectin.
What is the NIH and CDC's position on ivermectin? And I
have a lot of doctors who have contacted me and sent data from
various randomized control trials showing benefit with this
drug, and I have been reading that a lot of other countries are
starting to use ivermectin as a treatment for people that
aren't vaccinated. Maybe they don't have access to vaccines,
and it is cheap, and it is safe. So what is the position on
that?
Dr. Collins. That is another great question. Yes, there are
a number of studies on ivermectin. They don't all agree. There
are certainly people who are very enthusiastic about this, and
others who are quite skeptical. There is a recent pretty large
study published in Colombia, South America, where ivermectin
has been used a lot. It was quite disappointing and didn't show
benefit for people right after they got diagnosed to keep them
out of the hospital, but we are really intensely interested.
We just announced last week a new trial which is called
ACTIV-6, which means it is the sixth one of this partnership we
have with industry that is specifically aimed to test oral
agents that you can give to people right after their test turns
positive with exactly the goals that you just outlined.
Ivermectin is a very high-level candidate to get into that
trial in the very near future. So we are interested in getting
a really rigorous look at this. Unfortunately, there have been
other disappointments. We need to really find out exactly what
the answer is before we begin to advocate for it, but it is a
potentially promising lead.
Mr. Doyle. Great. Thank you.
Madam Chair, thank you so much. I appreciate your
indulgence.
Ms. Eshoo. Absolutely, Mr. Doyle. And it is wonderful to
hear that you are working with my constituent at Stanford.
And, Dr. Collins, I am worried about what is buried in that
big pile that you have to read. I hope that you have some
assistance with that because, if there are real kernels of gold
in there, we want you to get to them sooner rather than later.
We have Congresswoman Kathleen Rice. She is the last to
question this panel, and she has been with us since before we
gaveled in the hearing this morning. New member of the
committee, another Member that is value added, and you are
recognized for 5 minutes. You may be last, but you are not the
least.
Miss Rice. Thank you so much, Madam Chairwoman.
And thank you too for allowing me to waive on for this
hearing. I would like to thank Dr. Collins and Dr. Brooks for
all the work that you have done leading our public health
agencies throughout this pandemic and for your ongoing,
clearly, your Herculean efforts to understand this disease and
its long-term effects.
Dr. Brooks, I have some questions about the MMWR regarding
the study of long-COVID care that CDC conducted with Kaiser
Permanente in Georgia. Can you share with us what--and forgive
me, I had to mute a couple of times so I didn't hear if this
question was asked, but can you share with us what CDC learned
from the partnership with Kaiser and what might be some of the
limitations of the study and what are some of the limitations,
in general, regarding long-COVID research?
Dr. Brooks. Thank you so much for that question. Yes,
actually, no one did actually address exactly that question
before, so I am really happy to share with you and appreciate
the opportunity.
This is a study that CDC conducted with Kaiser Permanente
Georgia. If folks aren't aware, that is a big HMO here in the
State of Georgia. The main findings from the study were this:
Following people who are outpatients only, never admitted to
the hospital, right--so these were people who probably had
COVID they could manage outside of the medical care of a
hospital or an ICU--of these persons, during the 1 month to 6
months after their COVID diagnosis, about 68 percent sought
care for some condition.
Now that alone is sort of a striking figure because imagine
how many people after a head cold, pneumonia, influenza seek
additional care a month later. I can tell you from my clinical
experience, this is quite unusual. So that is a high burden. In
addition, among all of those people out of that total that
began, about 38 percent sought care with a specialist that
might be working on a body system that has been affected by
COVID. So someone like a cardiologist, a pulmonologist or
rehabilitation doctor, a doctor who deals with joint pain or
body pain.
That was the first important finding. The second was that
there wasn't a--that it was evenly distributed pretty much
across different groups. One of the nice things about the
study, though, is we were able to enroll a pretty hefty number
of African Americans and Hispanics, representative of their
prevalence here in the State of Georgia, and that is probably
because this HMO is one that is accessible to so many of our
citizens here.
Some of the limitations here are very important. First,
when you are using electronic medical records, you are having
to make a lot of inference about the data that you are finding
because you are not able to speak to the people that sought
care or talk to the doctors about, ``Why did I record that
finding in the paper?'' So understanding the patient's journey
is something that is not able to be gathered from this kind of
research, but what it does tell us is that we are seeing
patterns that are worrisome that a number of--a large number of
people who, after they recover from outpatient COVID, so not
needing to be in the hospital, are seeking care, and that is
not like other infectious diseases of the same kind.
Miss Rice. Wow. So I think I have time for one more
question, Dr. Brooks. As the data from the research hospitals
in your own MMWR seem to suggest a higher prevalence of long
COVID among women and non-Hispanic/Black individuals who were
not hospitalized, that group who were never hospitalized for
COVID. I mean, while it is obviously still early in the total
understanding of the disease, can you speak to how the data we
had is informing your guidance to clinicians as well as
patients?
Dr. Brooks. Right. One of the first lessons is, when a
woman tells you she has a problem, listen.
Miss Rice. That is a novel theory.
Dr. Brooks. I mean, I know some of the people on this panel
have probably and in Washington today had the experience of not
having their complaint taken seriously. It happens to men too,
it happens to everyone. But I think this is something that we
need as a clinical and public health community to pay attention
to.
Second, it is a little hard for us to disentangle this time
whether the excess burden, if you will, of what we are calling
long COVID per that paper is something that is driven by gender
or race/ethnicity or if it is driven by the inequity in who is
getting COVID to begin with. And so----
Miss Rice. Can I ask you, Dr. Brooks, how is the CDC
ensuring that the research takes into account health equity?
Dr. Brooks. Right. That is one of the ways we do it is, in
this study, we can only look at the records of patients who
sought care. So there wasn't much--what we do in many of our
other studies, particularly cohort studies where we can control
sort of who is enrolled, is we try to overenroll
underrepresented groups to ensure that they are present in
enough numbers that we can make valid research findings from
that important population.
And, in fact, some of our cohort studies now of the eight
we have running, there is one focused on the Alaskan Natives
and American Indians. Others are overenrolling African
Americans and Hispanics, and we look forward to being able to
continue doing that.
Miss Rice. Thank you, Doctor.
And thank you, Madam Chair.
Ms. Eshoo. The gentlewoman yields back.
Well, I can't--on behalf of all of the members of the
subcommittee and the Members that have waived on from the full
committee, all of our thanks to you, Dr. Collins and Dr.
Brooks. This has been 3\1/2\ hours of testimony and answering
questions. I think that we have all learned a great deal from
you. We also--I think it has deepened and broadened our
knowledge that we have a long pathway in order to fully address
long COVID.
I also want to highlight the intense interest of the
members of the subcommittee participating in this hearing. We
have outstanding Members on both sides of the aisle who care
deeply about this, and this is a nonpartisan issue. So it calls
for bipartisan approaches. We will continue to work with you.
We ask you to reach out to us when you see bumps in the road
where we can assist, but for sure we know, according to the
statistics, with 32 million infected by the virus and roughly
10 percent having long COVID, we have a population in the
country that we need to put our arms around and make sure--and
make sure--that we bring answers and care to them that is
designed for exactly what this is.
So we all thank you very, very much. You are absolutely
terrific. You are a source of pride to all of us, as more than
one Member has said, the American people listening in and
hearing and understanding your extraordinary commitment to the
people of our country. I can't think of anything that is as
beautiful as that. So we are lastingly grateful to you. And
just think, you are finished with us for today.
So you get to stretch your legs and hopefully have a good
late lunch.
Now, we are going to move on to our second panel of
witnesses, all distinguished--thank you, Dr. Brooks. I am so
glad that you participated. Thank you, dear Francis.
Dr. Collins. Thank you so much, Madam Chair.
Dr. Brooks. Thanks for your attention.
Ms. Eshoo. Absolutely. Absolutely.
So now we are going to start with our second panel. The
first three witnesses that I want to introduce are all long-
COVID patients. So they are not going to get into studies, they
are going to tell us about their day-to-day experiences.
First, Natalie--is it ``Ha-KAH-la'' or ``HAH-ka-la''?
Ms. Hakala. It's ``HAH-ka-la.''
Ms. Eshoo. Beautiful name. Natalie is a long-COVID patient
from Eugene, Oregon. She was a collegiate track star, and her
struggle with long COVID has been covered by HBO's ``Real
Sports with Bryant Gumbel.''
Thank you, Natalie, for joining us and making yourself
available to the committee.
The next patient, Chimere Smith, she also is a long-COVID
patient and a consultant for urban communities from Baltimore,
Maryland. Welcome to you, and thank you for responding to our
invitation to be a witness today.
And Ms. Lisa McCorkell, also a long-COVID patient and a
contributor to the Patient-Led Research Collaborative. Thank
you to you for accepting our invitation to testify today.
And two really distinguished physicians. Dr. Jennifer
Possick, she is the director of the post-COVID recovery program
at the Winchester Center for Lung Disease at the Yale-New Haven
Hospital. Welcome to you. And thank you.
And, last but certainly not least, Dr. Steven Deeks. He is
the professor of medicine at the University of California, San
Francisco, one of the great research institutions in our
Nation, and he is the lead scientist for the Long-term Impact
of Infection with Novel Coronavirus study, and that is referred
to as LIINC, I believe. So, welcome to each one of you.
Ms. Hakala, I am going to call on you first. You are
recognized for 5 minutes for your testimony. And, again, we are
very grateful to you and also for your patience, because this
has been and continues to be a long day, but so worthwhile for
all of us. So thank you, and you are on.
STATEMENTS OF NATALIE HAKALA, COLLEGIATE MIDDLE-DISTANCE RUNNER
AND LONG COVID PATIENT, EUGENE, OR; CHIMERE L. SMITH, LONG
COVID PATIENT, BALTIMORE, MD; LISA McCORKELL, TEAM LEAD AND
RESEARCHER, PATIENT-LED RESEARCH COLLABORATIVE, OAKLAND, CA;
JENNIFER D. POSSICK, M.D., ASSOCIATE PROFESSOR, PULMONARY,
CRITICAL CARE AND SLEEP MEDICINE, AND MEDICAL DIRECTOR,
WINCHESTER CENTER FOR LUNG DISEASE, YALE-NEW HAVEN HOSPITAL;
AND STEVEN DEEKS, M.D., PROFESSOR OF MEDICINE, UNIVERSITY OF
CALIFORNIA, SAN FRANCISCO
STATEMENT OF NATALIE HAKALA
Ms. Hakala. OK. Thank you.
So, as was stated, I was a collegiate runner at a D2
College. I got COVID July 4, 2020, and the first 2 weeks were
very, very mild. I just lost my taste and smell. I had a fever
for a couple days. My fever broke, and I was feeling, I
thought, normal immediately following my 2 weeks of quarantine.
Then, following my 2 weeks of quarantine, I began
developing chest pain, shortness of breath, difficulty
breathing. I had to take--I had severe fatigue building up.
Each week got worse and worse. By the end of July, I discovered
that I had pneumonia because I went to my primary care
provider, and it was shown that I had some slight indications
that it may be pneumonia in my lungs.
So they put me on an inhaler, some other medications to
help with that, some as-needed pain medications to help with
the chest pain I was having. During this time, I was still
trying to work, only half days. Going into August, I went to
urgent care once. Everything came back completely normal, so I
was sent home.
A couple weeks later, I went back, again, with severe chest
pain, unable to breathe, could not get comfortable. Went into
urgent care, and this time my oxygen saturation dropped to low
80s. You are typically supposed to have 95, so this was
concerning to them. So they admitted me to the hospital, and I
stayed there for a few days. They ran a bunch of tests.
I had a cardiologist look at me, a pulmonologist, an
internal medicine specialist. I think those were all the
doctors that looked at me, and most of my tests came back
completely normal. Nothing was really showing anything
abnormal, but because my oxygen saturation came back up, they
sent me home, and they had placed me on a couple of different
meds to kind of help with pain. And, hopefully, you lower some
of the inflammation factors that were happening throughout my
body. They were just assuming what was occurring.
And the rest of August I did not work. I stayed home on the
couch completely bedridden. I was unable to make breakfast. My
big activity for the day was taking a shower.
Throughout September, it was very, very similar if not
worse. I would not be able to have a conversation like I am
right now. I would be stopping every other word to catch my
breath. And in September is when I got my cardiac MRI, which
showed inflammation around my heart, and when I was diagnosed
with pericarditis. I had pleurisy, costochondritis, and just
overall inflammation they were assuming was happening,
especially around my chest wall because it was difficult to
take deep breaths. I started cardiac rehab in October, and that
was--I was only able to go for like 8 minutes, I believe, on a
treadmill at a very, very slow pace. I still--I barely started
watching TV because tracking things on a screen was too
difficult. It gave me severe headaches, and I was just too
exhausted.
By November, I was watching TV again. By December, I was
able to read a book. I couldn't remember a lot of what happened
in books. So I had to reread stuff multiple times just to grasp
what was going on. In January, by the end of January, is when I
got my vaccine. That first week was very uncomfortable for me.
I felt like I was back in September, and I did my very first
jogging in January as well. I jogged for 2 minutes, and that
was the farthest I could go at a very slow pace.
Then in February is when I got my second dose of my
vaccine. Same reaction as the first one, a whole week of
discomfort, difficulty breathing again, increased chest pains,
more headaches, more fatigue. And I was still very
uncomfortable following that. About 2 weeks after my vaccine is
when I started to notice that I felt like I was going back to
how I was in mid-January, and I was able to start jogging again
in February. I actually started help coaching. So I am coaching
a track and field team. So I am able to stand for a couple
hours a day now, and currently I am able to jog for 15 minutes
is the most I can go at like about a 10-minute-mile pace, which
compared to my previous self, I would normally run an easy run
at 8-minute pace. So I am still a little ways off, but
definitely improving.
My energy has improved a little bit. I am definitely able
to focus for a lot longer amounts of time now, but I am still
unable to work my full job that I previously was working before
I got sick. So that is kind of where I am at now, and I think
that is everything.
[The prepared statement of Ms. Hakalah follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Well, thank you very much. That is quite a
journey from the Fourth of July in 2020 you said----
Ms. Hakala. Yes.
Ms. Eshoo [continuing]. To the present. Thank you very,
very much. We appreciate your testimony.
The Chair now recognizes Ms. Smith. You are recognized for
5 minutes. And you may begin. Welcome and thank you, again, for
accepting our invitation to testify.
You need to unmute.
You need to unmute.
Ms. Smith. Thank you.
Ms. Eshoo. There you go. You are recognized. Thank you.
Glad you unmuted. We need to hear you.
STATEMENT OF CHIMERE L. SMITH
Ms. Smith. Thank you so much for the opportunity to speak.
I am sorry. I am getting my screen together. I apologize. Thank
you.
I asked myself if I was nervous about being here, and I
thought to myself that if I could spend 5 days a week for 5
years teaching brilliant, temperamental middle school students
in Baltimore, I could do anything.
I know that you are a tough crowd, but those students made
me even tougher.
I want to make it clear that I am no different than most of
the people you know with long COVID, but there is a
distinction. I am a Black--I am Black living with long COVID. I
am a Black woman living with long COVID. You may not be able to
tell, but I am a Black disabled woman living with long COVID,
and I am now a poor, Black, disabled woman living with long
COVID. Saying it aloud makes it no more easier to accept.
Long COVID is not just a White woman's condition no matter
the picture our media tries to paint initially. I am not alone.
Before we knew long COVID existed, there were many Black women
who suffered with chronic conditions that went ignored or
misdiagnosed. I don't know where these women are today because
they have been shunned from medicine and forced into silence.
I was not raised to tell my personal business. Like many
people, I was taught to be seen and not heard, that what goes
on in my house stays in my house. Yet had I lived by those
deeply imbedded mantras, I would not be sitting here before you
today.
I knew who I spoke for when I shared these experiences with
the NIH, and I know why I am here today. I am among Black women
who are now unemployed, homeless, and depressed with broken
bodies. Over the last year, Black women lost more jobs than any
other race. That means our medical bills, rent, and utilities
while struggling with this condition have been neglected.
If I did not have a loving family, I would be speaking to
you today from my car, the only property I now own. Our
circumstances may not seem different than others, but what
diverges our path is we were already disadvantaged and abused
by medicine, science, and government.
I was already poor during my childhood. I taught students
in the 'hood who were already receiving inadequate and
substandard healthcare. We have already been where COVID is
threatening to take people with privilege, power, and status.
We are not new to this. Sadly, we are true to this. We have
just been waiting and hoping for compassionate doctors and
politicians who would acknowledge us.
Long COVID is another weight to what Black people have
already been carrying. It just has another name. If you are
wondering why Black people won't speak out, they fear they may
end up like me. I lost my vision for 5 months because doctors
ignored my dense cataract from COVID and called it a dry eye.
They may end up with false negative tests, being gaslit into
believing they never had COVID or like Leiah Jones from
Charlotte, North Carolina, who wrote her own obituary before
dying from long-COVID complications.
No one wants to hear that long COVID has decimated my life
or the lives of other Black women. In less than a year, it has
made me forgetful, unreliable, unemployed, nervous, with severe
body aches and pains. It has destroyed our brains, the most
beautiful parts of us.
I was an excellent teacher. Now, I wouldn't trust my memory
or brain function with any child right now. Would you? However,
I am proud of how relentless and angry I became to save my own
life, and we are in desperate need of money, swift, sufficient
disability policies and benefits, comprehensive educational and
employment guidance that recognizes our condition, and
accommodations that welcome us into research studies without
conventional restrictions.
It is imperative that we create equitable research
standards and practices to capture current and innovative data
that focuses on Black people with long COVID. I was recently
rejected three times for an important NIH study. That alone is
a travesty. There are currently no studies reported that
specifically focus on Black people with long COVID. Also, as
there is a growing evidence of the direct connection between ME
and CSF in long COVID, we must reconcile that there are
millions of Black people who have already disappeared from our
society. We should be funding studies that find and treat ME
patients.
We need medical care that reflects equitable, cost-
effective, safe, and timely education and treatment. We have
recently learned from the CDC that Black people venture to
their doctors for care up to 6 months after their acute COVID
illness. This information is extremely telling because
historically we know that Black people don't like to go to the
doctor's. But now spending the last year as a poor, Black,
disabled woman with long COVID, I no longer need to wonder why.
Post-COVID clinics cannot do this work alone in urban
communities. I am working to create a hub for Black long-COVID
patients using my church building to provide free mental health
and other medical resources to support patients, their
families, and caretakers, but I need funding opportunities to
continue doing this work.
I am a poor, Black, disabled woman living with long COVID
trying to make and be the difference.
Thank you.
[The prepared statement of Ms. Smith follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you very much, Ms. Smith, for your really
compelling testimony.
The Chair now recognizes Ms. McCorkell for 5 minutes for
your testimony, and, again, we all thank you for accepting our
invitation to be a witness today. You probably didn't realize
that you were signing up for an entire day, but all of our
thanks.
You are now recognized.
STATEMENT OF LISA McCORKELL
Ms. McCorkell. Good afternoon, Chairwoman Eshoo, Ranking
Member Guthrie, and members of the subcommittee. I appreciate
the opportunity to speak to the long-COVID experience and to
shed light on the barriers that patients face that you have the
power to do something about. I am testifying today as a long-
COVID patient and as a member of the leadership team of the
Patient-Led Research Collaborative, a group of long-COVID
patients with backgrounds in research, policy, and data
analysis who were the first to conduct research on long COVID.
My symptoms began on March 14, 2020. Like many of what we
call first-wavers, I was not afforded a COVID test because at
the time tests were limited to hospitalized patients and those
with shortness of breath, cough, and fever, the last of which I
didn't have. I was told by a doctor to isolate and, within 2
weeks, I would be recovered.
A month later, I was in worse health than in that initial
stage. I couldn't walk more than 20 seconds without having
trouble breathing, my heart racing, and being unable to get out
of bed the rest of the day. My story is not unique, and this
was evident when I joined the Body Politic support group last
April and saw thousands of people who were also experiencing
prolonged symptoms. Patient-Led Research Collaborative was
born, and we conducted a survey of 640 patients documenting
these symptoms and experiences. The result was the first study
on long COVID and the first to document numerous neurological
symptoms and extensive multiorgan impact of the illness. It was
clear then, 1 year ago, that the death/recovery binary that
COVID has been framed to be is simply not true.
Our research helped raise awareness of the illness and got
the attention of CDC, NIH, and WHO. Our most recent survey
asked about 205 symptoms over 7 months and received almost
7,000 responses. In our recent paper, 92 percent of respondents
were not hospitalized but still experienced symptoms in 9 out
of 10 organ systems on average. We found that patients in their
seventh month of illness still experienced 14 symptoms on
average. The most commonly reported were fatigue, post-
exertional malaise, and cognitive dysfunction.
In fact, 88 percent experienced cognitive dysfunction and
memory loss, impacting their ability to work, communicate, and
drive. We found that this was as likely in 18-to-29-year-olds
as those over 60. Lesser-known symptoms include tremors,
reproductive changes, months-long fevers, and vertigo.
Over two-thirds require a reduced work schedule or cannot
work at all due to their health condition; 86 percent
experience relapses where exerting themselves physically or
mentally can result in a host of symptoms returning. Long COVID
is complex, debilitating, and terrifying. But patients aren't
just dealing with their symptoms. They are dealing with
barriers to care, financial stability, and recovery. Due to the
lack of a positive COVID test alone, patients are being denied
access to post-COVID clinics, referral to specialists, health
insurance coverage, COVID-related paid leave, worker's comp,
disability benefits, workplace accommodations, and
participation in research.
When we know that not everyone had access to COVID testing,
that PCR test had a false and negative rate of 20 to 40
percent, that antibody tests are more accurate on men and
people over 40, and that multiple studies have shown that there
is no difference in symptoms between those with a positive test
and those without, why are we preventing people who are dealing
with real symptoms from accessing what they need to survive?
Even with a positive test, patients are still being denied
benefits or have to wait months until they kick in. Medical
bills are piling up. People are being forced to choose between
providing for themselves and their family and doing what is
best for their body. The toll that having inadequate paid
leave, workplace protections, and benefits will take on our
economic and healthcare systems over the next several decades
is of a magnitude like we haven't seen before.
As COVID continues, more and more people are developing
long COVID. Waiting lists for post-COVID clinics keep getting
longer, and yet many clinicians continue to gaslight us and
tell us that our symptoms are in our head. This is particularly
true for people of color, women, and the LGBTQ community. I am
both privileged in my financial stability and lucky that people
with ME advised me early on to pace, which allowed me to
continue working.
But I want to mention something. Those stimulus checks that
you all provided us to get through the pandemic--I do really
appreciate them, but every cent of mine was spent on urgent
care and doctor's visits where I was repeatedly told that my
tachycardia, my inability to exercise, and brain fog was caused
by anxiety, and there was no way that I could have had COVID
since I didn't have a positive test.
Post-viral illnesses are not new. The cracks in our system
that long COVID has exposed are not new. It is just that now
more people are paying attention. We are counting on you,
members of the committee, to use the power your constituents
gave you to address these issues head on, to listen to you and
work alongside the disabled and chronically ill community to
prevent more people from becoming ill.
I understand these are big challenges and big topics to
address, but at this point there is no other option. Thank you
so much for inviting me to speak to you today, and I look
forward to answering your questions.
[The prepared statement of Ms. McCorkell follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you so much, Ms. McCorkell, and that is
exactly why we called you as witnesses today. So thank you
very, very much.
I now would like to recognize Dr. Possick. Thank you for
your patience in waiting, and we feel very honored that you
would join us, and you are recognized for your 5 minutes of
testimony.
STATEMENT OF JENNIFER D. POSSICK, M.D.
Dr. Possick. Thank you, Chairwoman Eshoo, Ranking Member
Guthrie, and members of this committee. And thank you, too, to
my fellow panelists whose company it is humbling to be within.
I hope to share my perspective as a pulmonologist caring for
people with post-COVID disease, including long COVID.
So in Connecticut the surge initially arrived in March of
2020. And within weeks thereafter, people were reaching out to
us about patients who remained profoundly short of breath after
their acute illness had passed. My colleagues and I were struck
by how difficult it was to tell the difference between people
recovering from mild acute COVID and those who had required
ICU-level care. Both groups had the physical, cognitive, and
psychological fallout we would expect from a critical illness
or a prolonged intubation. And in addition to being short of
breath, they reported a host of other symptoms.
I saw a teacher who had recurrent bouts of crushing chest
pain mimicking a heart attack, a young mother who would have
racing heartbeat and dizziness every time she played with her
toddler, a local business owner who couldn't remember the names
of his long-term customers or balance his books, and a home
health aide who didn't have the stamina or strength to assist
her elderly clients.
We assembled a team of pulmonologists, physical therapists,
and a social worker to provide a comprehensive evaluation in a
single clinic visit. A broader coalition with physicians in
cardiology, neurology, and psychiatry, all with COVID-19
experience, worked together to untangle complex symptoms.
We have spent this year learning alongside our patients,
about half of whom were never hospitalized. They are mostly
working age, previously high functioning. Many were frontline
or essential workers. Many were initially disbelieved.
Their quality of life has been seriously impacted. Some
can't walk to the mailbox or remember a shopping list, much
less resume their everyday lives and work. They have used up
their paid sick leave, they have cut back their hours, they
have left or lost jobs. They have difficulty accessing
workmen's compensation benefits and FMLA or securing workplace
accommodations. Some have even cut back on food, rent, or
utilities to pay for mounting medical expenses.
As was seen in SARS and MERS, we do have some patients with
persistent lung disease, but routine testing is frequently
unrevealing for these patients and requires more detailed
evaluation to investigate symptoms that span multiple organ
systems.
Some of our patients have completely recovered with time.
Others have made progress but continue to experience
debilitating symptoms.
Consensus practice supports many forms of rehabilitation
services, but insurance approval and coverage have been beyond
challenging, and demand outpaces availability in any case. For
patients with ongoing oxygen needs, requests for portable
oxygen concentrators can be delayed or even denied,
complicating physical recovery and mobility.
We are a well-resourced program at an academic medical
center, but we are swamped by the need in our community. This
year, we have seen more patients with post-COVID-19 conditions
in our clinic alone than we have of new cases of asthma and
COPD combined.
Looking ahead, the magnitude of the challenge is daunting.
There are over 31 million survivors of acute COVID-19 in the
United States. And we don't know how many people will be
affected, what kind of care they will need, or how long--what
kind of care that will entail, or how long they will need it.
Research will ultimately help us to understand the origin
of these symptoms and to identify effective treatment. But in
the meantime, their care cannot wait.
First, we must increase public awareness of post-COVID-19
disease, highlighting that it can occur after mild acute
illness in young individuals and in those without preexisting
comorbidities.
Second, we must ensure early and equitable access to care
for individuals with post-COVID-19 conditions, which cannot
practically be confined to specialty centers. Patients need
access, not only for evaluation but also to services like
pulmonary rehab, neurocognitive rehab, and mental health
services. Moreover, clinicians must be liberated from prior
authorization and appeals processes so that we can focus on the
care of our patients.
Finally, we must address the socioeconomic consequences of
post-COVID disease on working people, including the impacts on
their livelihood and health insurance access. We must recognize
that this condition, including occupational acquired infection,
has prevented many from returning to work despite their desire
to do so, and must ensure access to services and benefits.
We have made great strides and accomplished a great deal in
this unprecedented year, but as we move into the next phase of
response we must realize that we are pacing for a marathon
rather than a sprint.
I thank you again for the opportunity to take part in this
important discussion.
[The prepared statement of Dr. Possick follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you very much, Dr. Possick.
There is so much to absorb from our hearing today, but I
think that every Member is hanging on each word that is uttered
by our witnesses. So all of our thanks to you.
Dr. Deeks. A colleague said, I said Dr. Deeks is the lead
scientist for the long-term impact of infection with the novel
coronavirus study. So, Dr. Deeks, thank you, and welcome to our
subcommittee. And you are recognized for your time to give
testimony to us.
STATEMENT OF STEVEN DEEKS, M.D.
Dr. Deeks. Thank you. It is tough to go last. Much of what
I was going to say has been said, so I will go through this
quickly.
I want to talk about three things that are sort of known
scientifically and four or five things that are not known and
are key to sort of figure out just to provide a platform for
the questions, right?
So in terms of what is known, the syndrome is real, OK? And
that is, as our three first speakers sort of outlined, there is
a lot of stigma associated with this syndrome. And external
validation from NIH, from medical societies, from Congress that
this is a real problem, to me, is going to be very therapeutic
and hopefully reduce a lot of stigma around this. And so that
is great. There is not universal consensus, though, so there
are some skeptics out there. I will talk about that in a
second.
Second, there are many different flavors, many different
spectrums, phenotypes we call them in medicine, in terms of
what is going on with COVID. And I think this is very
important, because I think they are going to end up having
different mechanisms.
The vaccine story, right, so we heard these stories about
how vaccines make people better, and that is possibly because
the virus is persisting in certain people and the vaccine makes
the immune system stronger and the virus goes away. Our
experience in our cohort is that the vaccines actually make
some people worse. And we think it is because the vaccine is
enhancing inflammation.
So I think, you know, there are three or four different
pathways here that are at play with different syndromes. And so
it is not--I don't think it is long COVID. We are going to have
to basically slice and dice this, figure out the clinical
phenotypes, figure out the mechanisms, and then figure out the
therapies.
Third thing that is known is that symptomatic post-COVID is
common: 20, 30, 40, 50 percent of people have symptoms 4 to 12
weeks. Disabling disease, like we heard from the three stories
today, fortunately is not that common, but it exists and is
probably the thing that we need to focus in on in terms of, I
think, digging up mechanisms and therapies. So that is what is
known.
What is not known. First, we don't have a way of measuring
this, right? Everyone who has got a cohort or a clinic measures
it differently, they report stuff differently. As a
consequence, the epidemiology is a mess, right? We don't really
have a good sense of what is going on. We need--and this has
been said before--general consensus on how to define the
syndrome, how to measure it in studies so that we can all
basically be saying the same thing.
Second, we--and this is really to the first--we don't
really know the prevalence of either the minimally symptomatic
stuff or the very symptomatic stuff. And we don't really know
its natural history. And these things are actually stuff that,
hopefully, we are going to play out.
We do have a sense of who is at risk, right? And I think
there are a couple issues here. People who are very sick early
on are high risk, but asymptomatic people get it. Women--in
almost every cohort, women are more likely to get this than the
men. And this, to me, is probably the strongest hint that we
have in terms of the biology, because women, in general, are
more susceptible to many autoimmune diseases, and we know why.
And so paying attention to that fact of why it is more common
in women, I think, is providing very important insights into
the mechanism and is directing how we are going about our
science to identify therapies.
Third--and this is an important issue we haven't really
talked about. It is very complicated, and it is why there are
some skeptics out there. At the same time people are getting
acute COVID, they are living in a society that is broken. There
is lots of social isolation, there is lots of depression, there
is lots of people struggling who did not have COVID. And the
way in which these have--the way this social economic
environment that we are living in has interacted with this
acute infection is likely contributing to what is happening in
ways that are very important but I think ultimately are going
to be hard to untangle and something that has not been
discussed.
Fourth, we don't know the mechanism, but fortunately the
NIH is on it. And this is what the NIH does very well, right?
Go back to the history of HIV. They figured out very quickly
what the mechanism was of HIV. And once that happened, industry
got involved. And once that happened, we had 20, 25 drugs for
HIV. And so we need the mechanism. So what NIH will do, and
then once that happens, we will get industry involved.
And that leads to sort of the last two things, right? We
need more engagement from industry. Academics are not going to
fix this. We are going to describe the natural history, we are
going to figure out the mechanism, but we are not really good
at doing the drug development. And so we need to de-risk what
is happening in terms of industry. When you give them a
mechanism, we need to have the FDA and other people involved
saying, ``This is a disease, this is a syndrome that you can
treat. And if you do so, we will give you [inaudible] drug
indication.''
And finally, as illustrated by today's discussion so far,
we need at the table industry, regulatory, academic, we need
representatives from all affected communities, because every
voice counts. And how people are experiencing this very much
depends on where they are coming from.
Thank you.
[The prepared statement of Dr. Deeks follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you, very, very much, Doctor. It is really
compelling testimony.
Where do I start? I am going to recognize myself for 5
minutes of questions.
To Dr. Possick, on the issue of the multidisciplinary team
of specialists that were formed at the clinic, I always look
for what we already have established in our country that we
could make use of, such as, you know, the federally qualified,
you know, community health centers across our country. We have
made some very heavy investments through all the legislation
that we passed last year and I believe again in the American
Rescue Act.
In your view, can these be--you know, what we have in
clinics that are attached to academic institutions, but we
don't have that in every community in rural areas in the
country and we are not going to, especially moving through
this. Can that team, do you think, be replicated and stood up
through the community health clinics in our country?
Dr. Possick. Thank you for that question. I think it is a
really important one. I think it is important to acknowledge
too that the different kinds of post-COVID clinics that have
stood up around the country are all really different from one
another, and they are very much grassroots efforts. Whoever had
the resources, had the time, was able to take the initiative
and forge the relationships, because most of them are
multidisciplinary.
Ms. Eshoo. How many are there, do you know?
Dr. Possick. Over 60.
Ms. Eshoo. Ah.
Dr. Possick. Yes. So, you know, I think that it was
necessary to engage subspecialists to aggregate information
quickly and aggregate experience, but now is the time to bring
that back out into primary care and, particularly, community
organizations and federally qualified health centers, because I
think that the shear math of the potential problem will make it
essential that we do so and also not to leave any community
behind.
Ms. Eshoo. Well, obviously, that is always our goal, our
North Star. Because, boy, going back and trying to repair the
holes in the safety net is really an ordeal, and a lot of
people are hurt as a result of it.
I want to go to Dr.--what is the matter with me? Fog. Dr.
Deeks, are you aware of the study that is coming out of Texas
relative to this whole issue that COVID-19 alters human genes
and explaining the mystery behind the coronavirus long-haulers?
Are you familiar with that? And if you are, can you elaborate
on what is part of that?
Dr. Deeks. I am afraid I am not familiar with [inaudible]
study that you are talking about specifically.
Ms. Eshoo. OK.
Dr. Deeks. Virus infections and inflammation do affect the
methylation, and I am assuming that is what we are talking
about here, but I cannot honestly provide anything beyond that.
Ms. Eshoo. OK. Well, specifically, the scientists reveal
that the spike protein of SARS-CoV-2, the virus causing COVID-
19, creates long-lasting changes to human gene expression and
that these tiny spikes cover, you know, much of that. But maybe
you can research this a little bit and give me a written answer
to it, because I am very curious about it.
To Ms. Hakala and Ms. Smith, you have--if there is anything
you have driven home to members of the committee, is that you
have not been listened to. You have not been listened to. So
today, obviously, it is your chance to be heard. What do you
think is the most important thing that you want Congress to
understand about long COVID? And why don't we start with Ms.
Smith and then go to Natalie.
Ms. Smith. Thank you for asking that. I appreciate that
question. It has been so important to me, because I am a Black
woman who understands that, historically, Black women have not
been believed for so many different chronic conditions. It has
been important for me to drive home how important it is to
invest in equitable research and treatment and healthcare for
other Black women who are suffering with long COVID.
Many of us are afraid to speak out because, historically,
we understand that we have not been believed. We have not been
taken seriously. Some of my friends that I have met, my new
friends, my wonderful friends that I have met that have long
COVID now have mentioned to me--we share stories of being
racially profiled and discriminated the several times we have
gone to hospitals and medical centers for treatment, and that
is devastating.
So it is important for me to assure that Black people who
live in urban communities, underserved communities, low-income
communities where I have taught, where I have lived, and where
I have served for the past 5 and 19 years, that we receive
education and care that is comprehensive to us. We have not
received that yet. We have not received that yet. And there are
no studies that speak to that. So thank you for asking that
question.
Ms. Eshoo. Well, thank you for your answer. With all the
passion in the world, you are teaching us. You are.
Ms. Smith. Thank you.
Ms. Eshoo. Anybody who doesn't start paying attention to
you, you tell them that you were a witness in the Congress of
the United States.
Ms. Smith. I will.
Ms. Eshoo. Start with that one. And if they don't believe
you, have them call me.
Ms. Smith. Thank you. I will.
Ms. Eshoo. Natalie and Lisa, do you want to add something
to that?
I know I am over the time, but I think that, you know what,
we are spending--this is important time. Do you want to add
something to that that Congress needs to know?
Ms. Hakala. Yes. I want just say that, like she mentioned,
really making sure there is enough research. And like just
getting the word out to people that this is a recurring problem
for a lot of people in a lot of communities. And it is
primarily like frontline people and people who are not
protected initially and then weren't believed after they were,
like, serving all these other people. And they weren't believed
when they were told, ``You are having these problems.''
I was in the hospital and some of the doctors didn't even
want to come into the room and listen to my heart, because they
were--I don't know if they were afraid that I was going to get
them sick, even though I was past my 2 weeks of initial
infection, so I was no longer contagious, but they still did
not want to come in and treat me. They were afraid that--I
don't know if I would get them sick or what they were afraid
of. But it is very disheartening to not want to be heard. And
it is, like, really appreciative that you guys are listening to
us and wanting to help those people who weren't listened to for
so long.
Ms. Eshoo. Lisa, do you want to add something to that?
Ms. McCorkell. Yes. Thank you for the opportunity. I would
say, to echo Chimere and Natalie, I think including making sure
that there is equitable access to care and to research is one
of the most important things. It needs to be affordable care as
well. We are not really seeing that.
And then also, people need the ability to and the knowledge
to rest. That is one of the most important things that people
can do, particularly at the beginning of their illness. There
is research that shows that people who rest in the beginning
stages of their illness are less likely to have prolonged
symptoms at month six. But people don't have the ability to do
that financially. And that is a problem with our paid sick
leave, with our disability benefits, with worker's
compensation. So we really need to make progress with workplace
accommodation and our safety net in order to really help long-
haulers.
Ms. Eshoo. Well, I think that what each one of you said is
enormously helpful to all of the Members. And I thank the
Members for their patience in the Chair going way over her
time.
I now yield to the ranking member of our subcommittee, Mr.
Guthrie of Kentucky, for your time to question.
Mr. Guthrie. Thanks, Madam Chair. And I am going to try to
stay within my 5, but if one of my colleagues wants a little
extra time, maybe we can be indulgent as well.
Ms. Eshoo. I have been very generous with everyone, so----
Mr. Guthrie. I know. Exactly, exactly, as we move forward.
I just have--well, with all the questions I have had, you
guys have talked about it. And, one, Ms. Smith, we had hearings
on maternity and different disparities between people of
different ethnic backgrounds, and healthcare results is
something that this committee has looked at from, not just in
this respect, but a lot of others and holds serious and wants
to get to the bottom of and move forward.
The thing is I think all three of you said that you were
either underdiagnosed or misdiagnosed or not diagnosed, or I am
not sure moving forward. And it seems like Dr. Deeks kind of
had maybe one of the best explanations that it sounds like, in
your profession, you guys are trying to figure this out as
well. But it does seem--I think to quote, you said it is a
mess. That is what you said in your testimony.
But it does seem that people are presenting with some
issues, whether the physicians or the healthcare providers seem
to think that it is long COVID or some other issues. It just
seems like they are getting dismissed.
And, Dr. Possick, I spent a couple of years in the Yale New
Haven area. I have a lot of--very impressed with the Yale New
Haven Hospital there. And I think you also said that you have
more people presenting for COVID long haul than asthma or COPD
combined.
And so, why do you think that people are coming--to the two
physicians here, why do you think people are coming to the
hospital and having the type of experience they are having when
they really do have some kind of illness? I know it is
difficult to diagnose and it is also new, so we are trying to
figure it out, as Dr. Deeks said, trying to sort through it.
But could you just give us some insight why you think your
colleagues in the healthcare world are dismissing people as not
being sick when they are? Dr. Possick, do you want to go first?
Dr. Possick. Sure. Well, first of all, I think implicit
bias and cognitive bias are not issues that are new. But, as
one of the members pointed out in the first panel, it has sort
of thrown all these things into sharp relief, and we have had
to face them. But I think one of the particular challenges with
post-COVID conditions is that it is new and physicians don't
necessarily even know what to be looking for. I think some of
us are still not entirely convinced that this is all a single
entity, you know, and we are all just putting our hands on
different parts of the elephant. It may be that with time we
come to recognize, as Dr. Deeks says, that there are multiple
phenotypes. But I think our implicit biases have gotten in the
way at multiple points during this pandemic, and we need to
take steps to rectify that.
Mr. Guthrie. Are you collaborating with other
pulmonologists? Are you seeing--I mean, how are you guys
sharing this? Because that is what we are trying to--I am
trying to figure out. I am not speaking for all of us. But how
does this get disseminated as we are learning, as we go, since
it is so new?
Dr. Possick. The CDC has been incredibly helpful in this
regard. You know, the COCA calls have been essential. They
brought all of us to the table together to talk about our first
impressions, a general consensus, helping to simply name it.
Naming has power, and we need to do that sooner rather than
later and come up with clinical criteria so that primary care
physicians can feel empowered to codify a diagnosis for a
patient where maybe without guidance they don't feel
comfortable doing so.
Mr. Guthrie. OK. Thanks.
Dr. Deeks, kind of my line of questions, if you have some
comments on that as well.
I think you are muted.
Dr. Deeks. I can't believe I did that.
There are two things I would say. Clinicians like to be
able to measure stuff, right? They like--they want to measure
something and then they want to give a drug, right? That is
what we as physicians do. We want to test, right? So--and there
does not exist one for this problem, because the symptoms are
very difficult to quantify, and they are somewhat vague and
they vary from person to person.
There is, within this whole long COVID, a subset of people
who have tachycardia. And even--like me, I gravitate to that,
because that is measurable, right? People stand up, they have
fast heart rate. That is a diagnostic test. That is another
spectrum within this whole COVID. And I particularly, you know,
engage more in that because I can measure it and we can treat
it. There is treatment for that one. And so it is a cultural
thing, right? That is what physicians do. We want to be able to
say, here is the test and here is the treatment. And right now,
we have no test and we have no treatment, and this is the
fundamental problem.
Another issue, which I did mention, is a lot of clinicians
think, well, you know, we are all depressed. It has been a
lousy year. You know, let me tell you about my problems. And I
will tell you, I have colleagues at work who say, ``I don't
believe why you are studying this phenomenon,'' right? Because
if I have the same problem and I never had COVID, it is because
of the pandemic. And so these are the kind of discussions that
are happening in the clinic. And this is what people who have
[inaudible] are confronting this kind of culture, which will be
difficult to overcome.
Ms. Eshoo. It is his connection.
Mr. Guthrie. Well, thanks, thanks.
And that is why we are having this hearing, so that is just
helpful. Thanks.
And I did overspend my time. And I will yield back, Madam
Chair.
Ms. Eshoo. Well, you are most welcome, Mr. Guthrie, and
thank you.
The Chair is pleased to recognize the gentlewoman from
California, Ms. Matsui, for her 5 minutes of questions.
Ms. Matsui. Thank you very much, Madam Chair.
And I want to thank the second panel for sharing your
stories and your experiences with us today. That gives us a
sense of how people who have had this COVID-19 long haul have
experienced all of this. And we are just beginning to
understand what long COVID looks like, and your voices are key
to helping us determine where to go from here.
Now, we know that the COVID-19 pandemic and the resulting
economic recession have negatively affected many people's
mental health. Increased stressors such as job loss and
financial insecurity, as well as the physical distancing
necessary to slow the spread of the virus are difficult enough.
But patients with long COVID face the added challenges in
managing physical and mental symptoms of a new chronic illness.
Furthermore, patients with long COVID are often first referred
to healthcare professionals specializing in respiratory or
rehabilitation medicine.
Dr. Possick, as you reopened face-to-face outpatient
services, what strategies did your pulmonary practice take to
meet the multifaceted needs of patients presenting with post-
COVID-19 symptoms?
Dr. Possick. Thank you for that question. So we had very
deliberately created both an in-clinic and a beyond-clinic
model that was multidisciplinary, because we could tell, even
with the patients we met earliest via telehealth alone, that it
was not purely a respiratory issue. And we know that too from
post-ICU syndrome that it is multidimensional, really needs a
multidimensional approach.
We were lucky that we were able to assemble other
stakeholders in respiratory therapy, physical therapy, and in
other medical specialties to tack that on. But probably one of
the most important things we did is we built a collaboration
between our social worker and psychiatry services, which has
really been instrumental in helping support patients while we
work through the medical issues.
Ms. Matsui. That is wonderful.
Let's see. Lisa, I appreciate your testimony on integrated
medical care that is needed to treat long COVID. Can you
elaborate how mental health treatment fits in with that
approach?
Ms. McCorkell. Yes, absolutely. Thank you for the question.
I think with long-COVID patients, and I think, like Dr. Deeks
said earlier, you know, there is--we are all going through a
lot right now, and particularly with long COVID, there is a lot
that needs to be treated but as a secondary treatment. And what
is happening with a lot of long-COVID patients is that, like
what happened with me, anxiety is being treated as a primary
treatment. And just because we may present with anxiety doesn't
mean that is causing our symptoms. I think that is really
important for a clinician to understand. We are dealing with
having a new chronic illness, newly becoming disabled, as well
as just living during a pandemic.
And I think in terms of an integrated care, it is really
important that in any kind of post-COVID clinic or any kind of
clinician setting, that the mental health treatment is
available and is recommended for folks, but, again, as a
secondary treatment.
And I did want to mention just something in regards to
post-COVID clinics. I think a lot of them have provided a lot
of really great care, but currently there is no Medicare
reimbursement strategy that is happening. And that is something
that really needs to be prioritized, because, without that, it
is really inaccessible and inequitable.
Ms. Matsui. OK. Well, thank you, Lisa.
Dr. Deeks, you made the salient point that untangling
symptoms related to infection versus other issues will be
difficult when it comes to treating long COVID. Do you agree
that integrated care is the best approach here?
Dr. Deeks. I worked--before 2020, I did full-time HIV care.
And HIV care, since the late '80s, has been one in which we
integrate all aspects of care in the same clinic, and it works.
And a really important part of the care that we provide in the
public health clinic is access to social workers and people who
have expertise in sort of working through all the issues with
insurance and so forth.
So, yes, we need integrated care with physicians, physical
therapists, psychiatrists, and I actually think a lot of social
workers and people who can do patient support groups. And that
is what these clinics would do and provide people with access
to all this stuff. But it is navigating these complicated
economic issues that is really, really difficult. And that
needs to be part of the clinic. And I think the three stories
we heard today sort of made that point.
Ms. Matsui. Absolutely. Thank you very much, Dr. Deeks.
And I yield back. Thank you, Madam Chair.
Ms. Eshoo. The gentlewoman yields back.
Pleasure to recognize the ranking member of the full
committee, Ms. Cathy McMorris Rodgers, for her 5 minutes of
questions.
Mrs. Rodgers. Thank you, Madam Chair.
Ms. Smith, you say that we must reconcile our unwillingness
to recognize chronic conditions we can't visibly see. What do
you believe can be done to educate health providers and
patients about long COVID?
And in your testimony, you discuss using your church as a
hub for patients and their caregivers to receive long COVID
education and mental health treatment in Baltimore. Would you
describe that project in more detail?
Ms. Smith. Sure. You know, I am in the planning process and
in the grant-writing process of that proposal, hoping that I
can get some funding from somewhere so that I can make that a
reality. And I think that is important.
Both questions that you ask tie in together. I am talking
to the post-COVID clinic at Johns Hopkins, which I did not
qualify for, sadly, because I have never tested positive for
COVID. But one of the doctors there--who I can't recall,
because I have brain fog, and memory loss, and I am excited--
she and I will be working together to try to find a way, a safe
way, a protective way to reach some of those patients who need
additional support outside of that care clinic.
And so it is my hope that the proposal that I write will
explore a safe way, you know, for the residents of the
northwestern Baltimore community to come to a place where they
can receive mental health treatment or counseling sessions, to
receive any additional medical education that we can provide
for them and their families. It is so important, because I had
to travel to Washington, DC, to get--to be even qualified for a
post-COVID clinic appointment. And so people like me who live
in a low-income neighborhood should not have to travel so far.
So those doctors at that postacute-care clinic, we are talking
together to find a safe, equitable way for us to educate the
people of Baltimore.
Mrs. Rodgers. Thank you for sharing.
Dr. Deeks, I heard about a recent study of patients
diagnosed with COVID-19 that found, 6 months after their
diagnosis, a third of them were experiencing psychiatric or
neurological illness. Would you speak to what we know about the
impacts of COVID-19 on mental illness?
I think you are muted. Sorry.
Dr. Deeks. I have been doing this for a while. I should
figure this out.
So you can't untangle these things, right? The mental
health issues, anxiety, depression, they contribute to physical
symptoms, and physical symptoms contribute to them. And this is
particularly true of people who have the neuropsychiatric
flavor of the symptom, but it applies to everything. So it is
an absolutely critical part of what people are experiencing
[inaudible] consequence of what their experience is not known.
It probably goes a little [inaudible] but it requires access
that people who have the expertise to treat it. It is a big
part of people's--what they are experiencing.
Mrs. Rodgers. Thank you.
Dr. Possick, I just wanted to ask you very quickly about
young people in particular who are thinking that they are
invincible to COVID. Would you tell us about the importance of
increasing public awareness about the post-COVID-19 disease and
especially highlighting the mild acute illness and what young
people are experiencing?
Dr. Possick. Certainly. Thank you for the question. Young
people have been part of our patient cohort from the start, in
part because of the healthcare workers that we were treating
early on, a lot of them were young Black women. But as time has
gone on and vaccines have been rolled out to older and at-risk
individuals first, our clinic population has shifted younger
and younger.
These patients often report that they were minimally sick
at the onset and really taken by surprise with how much they
are struggling now. I think it is difficult to message, but an
important part of the message that I think, as Lisa said, you
know, it is not a binary outcome, survival or not. There are
many possible downstream effects of getting ill with COVID-19,
and this is an important one for people who view themselves as
low risk or no risk need to hear about.
And we need to also work to understand and address what
motivates vaccine reluctance so that we aren't simply finger
wagging, that we are engaging in that dialogue and
understanding what that is about.
Mrs. Rodgers. Thank you so much. Thank you, everyone.
I yield back, Madam Chair.
Ms. Eshoo. I thank the ranking member. Yields back.
There are many Members that rank on the list here in terms
of themselves presenting themselves this morning, but there are
at least maybe 10 that are not available. So I am going to go
to and recognize Congresswoman Dingell from Michigan for her 5
minutes of questions.
Mrs. Dingell. Thank you, Madam Chair. And I want to thank
all of the witnesses for your patience today but also your
testimony.
I have to tell you that--and you can tell as Members have
been talking to you that there have been patients that have
reached out to us, told us their stories. And we know the
trauma many of you are suffering from, of people even taking
you seriously, where do you go, how do you get support, et
cetera. So what I have found very impressive in the testimony
today and in discussions with other people is the Patient-Led
Research Collaborative. The U.S. has unmatched research
infrastructure, and we have started to advance patient-centered
research through organizations like PCORI.
But I am really impressed with the ability of patients to
self-organize around a new condition like long-haul COVID and
get your voices together and to be effective quickly. And I
think that is really important and to get your results quickly
into the medical literature.
So I would like to ask Ms. McCorkell some questions. Thank
you for being here, first of all. Can you share more about the
patient-led research group and how your team formed?
Ms. McCorkell. Yes. And thank you so much for those really
kind words. I completely agree with you that patient-led
research is filling a gap right now.
So Patient-Led Research Collaborative formed back in April
of last year. We just celebrated our 1-year anniversary. And it
was after all five of the team leads, we all got sick in March
and realized after a month that we were still. We joined the
Body Politic support group, which has helped so many people
just find a community of other folks who are going through the
same thing. And we all have research backgrounds. Mine is in
policy. And we realized that there was just so much information
being shared and someone needs to document it, because it was
clear at that point, which was April of last year, no one was
really paying attention to us. Doctors were gaslighting us. We
weren't able to get tested. And the media at that point wasn't
covering us either.
So we put out a survey, we got 640 respondents, and that
was the first research on long COVID. And I think that really
helped to bring to the forefront of the conversation this issue
and this illness. So that is a little bit about how we formed.
Mrs. Dingell. And I hope that you all at our hearing today
and are going to take back to your coalitions that we are
hearing you. And that is why Chairman Eshoo doing this hearing
is so important, because you are helping spread the word via
this, and we want to support you. But my next question is, how
is your organization engaging with researchers at the NIH or
with PCORI? How are we making sure it is coming together the
way it needs?
Ms. McCorkell. Yes. So thankfully we have had a lot of
outreach with different researchers, and there are definitely
researchers out there that we have been in conversations with.
We actually have applied for part of the funding that NIH is
providing. So I guess we will hear back from Dr. Collins in the
next few weeks. So we have applied in partnership with other
researchers on that funding.
So with PCORI as well we are hoping to do a project with
them. So we are in communication with a lot of folks.
I think our biggest hope, though, is that, you know, there
were over 200 applications for this NIH funding, which is
awesome. But our worry is that not all of them are going to
incorporate the patient voice. Not all of them are going to
incorporate the patient voice, not all of them are going to
incorporate past research into post-viral illness, like ME/CFS,
not all of them are going to incorporate ME/CFS patients. And
these are very critical in order to actually create findings
that are going to be useful for long-COVID patients.
Mrs. Dingell. Well, I am running out of time. So I think if
we could maybe get your input for the record on some issues,
like how do we advance patient engagement in our country's
research efforts, and how do we build--would it help us build
trust in research and diversity efforts?
But I really hope you are hearing from Republicans and
Democrats alike. There is no--we are hearing you, and we want
to help you all. And I have heard from people in my district,
as you all are saying, ``People don't believe us, they don't
know it.'' We believe you, and we are here. We are going to
help you.
So, thank you, Madam Chair.
Ms. Eshoo. The gentlewoman yields back, and thank her.
A pleasure to recognizes Dr. Burgess for your 5 minutes of
questions.
Mr. Burgess. Thank you.
Appreciate everyone being on this hearing and staying
around for this part of it. It is so terribly important. And
just like every other Member, I have heard from a number of
people [inaudible] different time there was something called
Gulf War Syndrome. And while my clinical practice was not
taking care of people who had Gulf War Syndrome, my clinical
practice was taking care of a number of spouses of people with
Gulf War Syndrome and the original assignments that this is
malingering, imagined, it is not real.
It was actually the actions of Ross Perot, Sr. who got some
epidemiologists at Southwestern Medical School involved and
discovered an actual pathologic pathway where there was an
inactivity of one of the pseudo phosphodiesterases enzymes, and
these people could not metabolize even small amounts of nerve
gas that they might have encountered in the first Gulf War. And
as a consequence, they ended up to go on first with a set of
nonspecific symptoms but then did progress to something that
very much resembled ALS. But by the time that was in evidence,
it was probably past the point of being able to do much besides
just make someone comfortable.
So this work that is going on is so incredibly important.
And I appreciate so much patients, I appreciate the clinicians
who are working on this, and I know it is not easy, and I
appreciate the perspective the patients are bringing to us. It
is hard to not be listened to. And let me just tell you, from
the standpoint of someone who at one time ran a very, very busy
medical practice, you get behind and you are able to devote 6.2
minutes to every patient, and it can be hard to give the proper
amount of attention.
And I guess what I would ask Dr. Deeks and Dr. Possick on
the call, is it possible with what we know now with
telemedicine with the way that has come into its own, is it
possible to provide some additional help to the people on the
front lines, both diagnostic and/or some of the therapeutic
interventions that might be entertained?
Dr. Possick. I can tackle that first. I think I would say
that we found telemedicine to be indispensable. We probably
were late to adopting it the way we should have, and COVID-19
forced our hand in a good way. It has been helpful. We need
better support and infrastructure for it, because telehealth is
not an equitable access resource for all patients. And there
are barriers to reaching people who have technology barriers or
health literacy barriers in other ways. But I do think that it
will play an important role.
We use it interchangeably with our face-to-face visits now,
depending on where our patient is and what they can manage,
because navigating all this multidisciplinary care is
exhausting for people. And sometimes it is easier for them to
engage with a visit from their home than to come into the
clinic.
Mr. Burgess. Sure.
And, Dr. Deeks, do you have anything you would want to add
to that?
Dr. Deeks. Well, if you had a lot of money, you would do it
right. If you would do what you did with the Ryan White
programs, right, which was money was basically put aside in
urban centers to provide disenfranchised, uninsured people who
had HIV with access to these integrated-type clinics in which
they didn't have to worry about paying for anything. They just
showed up and they got everything they needed. And it was
incredibly therapeutic and effective. And, you know,
ultimately, I----
Mr. Burgess. Let me just ask you----
Dr. Deeks. Initially----
Mr. Burgess. We had some experience with Project ECHO in
more rural parts of my State where the access to specialists
can be a force multiplier for patients who wouldn't have the
availability of sophisticated specialists. Is that something we
can incorporate into the care of a long-COVID patient?
Dr. Deeks. Since there's so many specialists involved and
there is a need to bring them to the same place so people can
navigate it, yes. How they go about doing that is going to
require resources and some original thinking.
Mr. Burgess. Yes. You know, I was thinking when Dr. Collins
was talking about, you know, some of the things that we don't
know, is this a lingering effect of the virus in someone's
system? Is this an effect of a vasculitis? And then he
mentioned a third thing that now I don't recall off the top of
my head. But there is a possibility it is also in the
individual, it may be any one of those things. In some there
may even be a combination or a spectrum. It just strikes me
there is a lot we have to learn about this. But anything we can
do as a force multiplier on the provider side is ultimately
going to benefit our patients. And, clearly, with the stories
we have heard today, we are not doing necessarily the best job
in hearing and listening to the patients who have presented to
us today.
I thank you all for your input on this committee. It has
been very valuable. I will probably have some questions to
follow up on the questions for the record in a written
response. So thank you all for being here today.
Ms. Eshoo. The gentleman yields back.
And it is a pleasure for me to recognize the gentleman from
California, Mr. Cardenas, for your 5 minutes of questions.
Mr. Cardenas. Thank you very much, Madam Chairwoman. And
once again, thank you and to the ranking member for having this
important, important hearing and certainly bringing on this
second panel to enlighten us some more so that we can make
better decisions with the taxpayer dollars and also with the
policies that we advance across the country. So thank you all
very, very much for being here to help enlighten us.
I also want to especially thank all of the witnesses and
those of you who have given us your heartfelt experiences. And
you have been willing to share with us in view of every person
who chooses to tune in across this country. And these are
important stories because they are real stories. And we have to
do things to make sure that they do not repeat themselves. This
is literally life and death that we are talking about.
My first question is to you, Ms. Smith. In your testimony,
you express that you carry the weight of other Black women who,
like you, have been misdiagnosed and frightened. But also I am
going to put upon your shoulders, you have expressed what I
heard personally from Hispanics, from Native Americans, and a
lot of people who have, unfortunately, received less than the
care that should be available to them when somebody else is,
rightfully so, getting that care. So thank you for being here
and representing yourself----
Ms. Smith. Thank you.
Mr. Cardenas [continuing]. And especially those people and
every person--man, woman, and child--who has received less than
what merits them in our amazing system when it works well.
My first question to you is, do you think racism exists in
America? And is it limited or does it stop at the door of
healthcare?
Ms. Smith. It absolutely exists in America. I have
experienced it. I am a middle school teacher in Baltimore,
Maryland, and I have experienced it even in some of these--on
some of these, you know, meetings and organizations and
corporations and these talks. While I am excited and thankful
for the opportunity, I still see that we are doing a--we are at
a deficit with how we include Black stakeholders and
researchers and scientists and doctors into this conversation.
It is what--before I became ill last March, it is what I tried
and strived so hard to teach my students about. We were in--you
know, I teach low-income students and families but in an
affluent neighborhood. I wanted them to be aware that just
because they were Black and sometimes underrepresented, that
they still had a place in the educational system.
As I mentioned in my testimony, I had been repeatedly,
repeatedly racially profiled over the course of the last year.
I think the assumption for me is that because I am Black and a
woman in a low-income neighborhood, that I am not aware of my
body, that I can't research what is happening to me, and that I
am not articulate enough to share those experiences. But what I
think I have been able to do is to challenge that perspective.
And so I also have talked to other women--I talk to them every
day--and our fear is that we will be left behind because we may
be too afraid to speak out.
So it is my hope to challenge doctors who racially profiled
me, who called me too aggressive, who used microaggressive
language with me to change the dynamic and change the narrative
of what long COVID looks like. It is not just a White woman's
disease, and, sadly, that is the way it has been painted.
Mr. Cardenas. Well, thank you for expressing those truths.
And one of the things that I would like to point out, I
know the word ``racism'' hits people like a dagger.
Ms. Smith. Yes.
Mr. Cardenas. And I think some people think that somebody
who is expressing or treating somebody in a racist way has got
a bad heart. Unfortunately, I think many times it is just
ignorance. It is just the person doesn't recognize that we all
have biases, doesn't recognize that this person whose voice
might be a little different than mine, whose mannerisms might
be a little different than mine or what have you, it is not a
negative thing, it is just different. It is just different.
But, unfortunately, the weight of those actions day after day,
especially when your life depends on this person giving you the
respect and the attention that they are actually paid to give
you, the respect and the attention you have actually paid for,
it is kind of like, if I were to put a little pebble in my
hand, I could hold it, but add one pebble and 1,000 pebbles and
2,000 pebbles and somewhere along the way, my arm is going to
go down because the weight is too heavy.
So I just want to say how much I appreciate you coming
forward and expressing yourself and enlightening us to the fact
that racism isn't something that starts from ugliness, but the
results of racism far too often are ugly, they are damaging,
and in some cases could lead to ending someone's life. And
entire communities are receiving that. And it is important that
we recognize that we are not calling people bad people who
participate in contributing to that. We are just saying please
look in the mirror and recognize it, check yourself. And if
somebody checks you, please understand, be open, be open to
being checked, and then be willing to apologize if you
recognize that you have acted in ignorance.
So, anyway, I apologize for going over my time, Madam
Chair. Thank you all so much for coming today.
Ms. Eshoo. Wonderful. The gentleman yields back.
A pleasure to once again recognize the gentleman from
Virginia, Mr. Griffith, for your 5 minutes of questions.
Mr. Griffith. Thank you very much, Madam----
Ms. Eshoo. There you are.
Mr. Griffith. I am here. Thank you very much, Madam Chair.
Ms. Eshoo. Sure.
Mr. Griffith. I do appreciate it.
Dr. Deeks and Dr. Possick both, as you may have heard in
the prior--and I understand it has been a long day--but in the
prior testimony, I talked about a friend of mine who has long
COVID. He has been in and out of the hospital four times,
mostly with breathing issues and, of course, just generally
being weak. His doctors are telling him that, you know, as he
moves along, that he should be doing, you know, more exercise
and that that will take care of the problem.
Do you think that makes sense, or is it just that every
case is so different that it is just very hard to say what
makes sense across the board? Go ahead and start, Dr. Deeks,
and then, Dr. Possick, if you want to.
Dr. Deeks. Well, Dr. Possick is an expert on this very
specific issue, so I will defer to her.
Mr. Griffith. All right. That would be fine.
Dr. Possick. I think we have seen great value in many
different kinds of rehabilitation therapy for our patients,
which may not be true for all patients. But I also think that
we have to approach statements about rehabilitation carefully,
because it is not a one-size-fits-all solution and has to be
adapted to the patient in front of us: their particular
condition, their particular symptoms, our hypothesis about why
they feel the way they do, and how they respond to initiation
of rehabilitation.
And it is not merely physical rehabilitation. It can
involve speech therapy, cognitive therapy, occupational
therapy, and specialized programs like pulmonary rehab and
cardiac rehab. And the appropriate solution for any given
patient requires assessment by a professional in physiatry or
physical therapy.
Mr. Griffith. And I think what makes it so difficult, from
listening to the testimony of you all today and our prior
panel, because, originally, my questions were what is the
answer and what should the fix be, what should the treatment
be. And it sounds like it is different for every person. And
doesn't that make it difficult for the frontline physician or
medical care professionals? Because somebody comes in
presenting, it may not be the same way that somebody else with
long COVID presented just last week. And doesn't that make it
hard on the primary care doctors to be able to figure out that
they are dealing with long-term COVID issues?
Dr. Possick. That is true, but it is not true of only this
circumstance. We face that with a lot of different medical
conditions. And there is a high degree of heterogeneity in
nearly every disease that we treat.
I think that a starting place is dialogue like this, and
also definitions and best practice guidelines from CDC and from
professional organizations that then give frontline primary
care providers a tool to tease out what they think is going on
with any particular patient in front of them.
But, you know, heterogeneity is not novel to this one
circumstance. It is something that we face in a lot of cases.
But we need to just start by acknowledging that that is also
the case here.
Mr. Griffith. Yes. And I think this hearing is good, and so
I appreciate your time in this long day, and everybody's time
on the panel this long day, because I think there is a public
misperception on this too. Because I will tell you that I don't
know exactly why we thought he was getting better and he really
wanted to get back to work. And at one point, months ago, I had
lunch with him and then he had a relapse. And I think there is
this perception that, you know, OK, you had COVID, get over it,
come back to work or get over it and get back to your regular
routine. And for so many people, that is just not possible. Is
that a fair statement?
Dr. Possick. Yes. I think that, in this condition, like
many, recovery is not linear.
Dr. Deeks. So this waxing and waning of symptoms is
difficult to explain why that would be, but it is very common.
It is very common. So I don't--we don't have a mechanism for
it. We don't know why that would be, but it is something, I
think, certainly in our clinical cohort, we have seen that.
People have good days, they have bad days. And it is hard to
explain why.
Mr. Griffith. Yes. I appreciate that very much.
And, with that, Madam Chair, I yield back.
Ms. Eshoo. The gentleman yields back.
The Chair now recognizes the gentlewoman from Illinois, Ms.
Kelly, for your 5 minutes of questions.
Ms. Kelly. Thank you, Madam Chair.
And thank you to the witnesses and all of your patience.
Ms. Smith, thank you so much for coming today to share your
experiences as a Black woman. As a Black woman, I really,
really appreciate that. You shared some things, but can you
tell us what areas of opportunity that our healthcare system
could have supported you more? Like what would you have liked
to have seen? What do you want to happen? How can you improve
the system?
Ms. Smith. Absolutely. Thank you for the question. I would
have loved from the very beginning to have doctors who
documented my experience and the narrative that I shared with
them about my experiences. What I find now is one of my biggest
problems, and I know it is the problems of many long-COVID and
ME and CSF patients, is that the notes that are being written
about us do not depict an accurate picture of our experiences.
I have had to go through pages and pages and pages of
medical records that don't even indicate that I said as the
patient that, even though I tested negative for COVID, that I
believed--even though I tested negative, that I believed that I
have it. And so--there has also been so much inaccuracy in what
has been reported about me.
I have been recently reading a doctor who says that he
doesn't know whether I worked over the last year. I can tell
anybody that I have not worked a single day since March 23,
2020. And so it is my hope that, especially in the Black
community and other urban areas and even rural communities,
that our narratives, our experiences are documented into those
notes.
It makes our lives a little bit easier when that happens,
because now I am facing challenges with my employer because of
the notes. I was dismissed from the NIH studies because they
claimed that I didn't have medical notes that represented my
condition.
And so copious notes from doctors are so important, and
ironically I just got an email from a doctor recently as a
couple minutes ago who said that he has added my experience to
documentation.
So that is going to help me when I apply for disability
benefits, which I know I will need in the next couple of
months. So that is the most important step that we can make to
helping long-COVID patients.
Ms. Kelly. Thank you so much for sharing. I am the chair of
the Congressional Black Caucus Health Braintrust, and I do a
lot of work around maternal mortality and what has happened to
Black women. So I appreciate you sharing. We need more people
to do that.
Dr. Possick, as we know, COVID-19 disproportionately
impacted Black and Brown communities, which is evident in that
data of infection rates and mortality rates. And it seems like
we are seeing this trend in long COVID disease. What barriers
are keeping people from receiving the equitable post-acute care
that you state is necessary for all to receive?
Dr. Possick. There are many. I think trust of the medical
system is one. They can be more prone to be reluctant
reporters, particularly if they are trying to return to work,
return to their lives. There is a stigma associated with
reporting these symptoms at all, and if they have encountered
discouraging interactions early on, then they stop offering up
the symptoms.
I think that, for working people, it is difficult to access
medical appointments, period. Even if you can get an
appointment, getting time off of work to go and do that, engage
in the testing, engage in therapy can be really prohibitive. If
I tell a patient of mine I think they need to go to see three
other people, how can they possibly do that if they are also
trying to earn a wage?
So I think that those are among the issues, you know,
particularly with respect to underserved populations and people
who don't have access to transportation, to telehealth-ready
devices, that it can be very difficult to access care from afar
that other people of means can. And also just generally
navigating the system, trying to work through how to apply for
workman's comp for disability is incredibly complex. And so,
without empowering people and helping them to access those
services, they just face insurmountable challenges.
Ms. Kelly. Thank you so very, very much and thank all of
you for being here today.
I yield back, Madam Chair.
Ms. Eshoo. The gentlewoman yields back. Pleasure to
recognize the gentleman from Florida, Mr. Bilirakis, for your 5
minutes of questions.
Mr. Bilirakis. Thank you so much, Ms. Chair. Thank you very
much. This has been a great hearing, a bipartisan hearing, and
I appreciate that so very much.
Ms. Kelly. What you need real quick what I am setting up
for them?
Mr. Bilirakis. Can you hear me? OK.
Ms. Eshoo. If Robin Kelly would mute. OK?
Mr. Bilirakis. OK. All right. We are good. We are good.
Dr. Deeks, is there a universal definition for long-term
COVID, or is it a catch-all term?
Dr. Deeks. There is not even an accepted name, let alone a
definition.
Mr. Bilirakis. Yes, yes. So the lack of standardization,
does it impact research? And if so, how, and how can we
standardized--how can it be addressed? I know it is tough, like
you said. It is a very difficult to get your arms around it,
but please if you could respond.
Dr. Deeks. Yes. So I think Dr. Possick is maybe involved in
some of these discussions more than me, but there is--there is
an effort underway by various people around--various groups
around the world to come up with case definitions. And my
concern is that we may end up with several, and everyoneis
going to use things that are different, but it is an absolutely
essential thing--do you have any comments on this, Dr. Possick?
Mr. Bilirakis. Yes, Doctor, please.
Dr. Possick. Yes. I think that when I read these very
important and enlightening studies that are based on EMR
culling of data, I wonder about who we are missing. Because
when I see a patient in a visit and I enter a diagnostic code,
I have to use what I think best aligns with the patient I am
seeing. So, even if I use a code that includes a personal
history of COVID-19 or suspected COVID-19, the primary
diagnosis may still be the thing that I am seeing them for.
So pulmonary infiltrates or interstitial lung disease or
shortness of breath, and because we all approach this and code
in different ways, because we are just trying to do our best, I
don't know that studies that rely on EMR data are capturing
everyone whereas, if there was adoption of uniform ICD-10 code
for post-COVID conditions, yes, it might be a relatively blunt
instrument that doesn't capture the phenotypic diversity, but
it would at least identify people more readily. And I think
that is really important.
Mr. Bilirakis. OK. Thank you.
Dr. Deeks, why do COVID long-haulers initially seem to be
asymptomatic only then to suffer these devastating symptoms
like, again, we had with one of the presenters today? Can COVID
hide in our system? If so, what does that mean for diagnostics
and targeted therapies? And what are the most common long-term
symptoms of COVID-19?
Dr. Deeks. Let me deal with the first one, which is the----
Mr. Bilirakis. Sure. Absolutely. Please.
Dr. Deeks. That is my area of expertise. Why would
someone--so people who have very little symptoms begin with----
Mr. Bilirakis. Yes.
Dr. Deeks [continuing]. Probably don't have much virus to
begin with.
Mr. Bilirakis. OK.
Dr. Deeks. So why would those people be sick months later?
It is the way--these people when they are exposed to anything,
just a little bit, it sets off an inflammatory response, an
autoimmunity. So people develop antibodies to their own body,
and that makes them sick. That is a leading theory for why
someone who--it doesn't take a lot of virus in the right person
to stimulate these autoimmune disorders. So that is--as to what
the most common symptoms are, I don't know.
Dr. Possick sees these patients more than me. What do you
think?
Dr. Possick. So, depending on the study you look at, you
get different statistics and ranking for that. I am a
pulmonologist in a lung clinic. So the most common symptom I
see is shortness of breath, probably followed by tachycardia,
fatigue, and what I would broadly term exertional intolerance.
And sometimes orthostatic intolerance like difficulty sitting
or standing for a long period of time, much less exerting one's
self, but really we have seen symptoms that span every single
organ system, depending on the patient.
Mental health symptoms are very prevalent, both in the
population that was hospitalized and those that were not. And
this includes new mental health symptoms, not just exacerbation
of preexisting conditions.
Mr. Bilirakis. OK. Well, thank you very much. I know my
time has expired, but I appreciate it very much. Thanks for the
testimony. We learned a lot today. I know there is more to
come. So thank you, Madam Chair.
I yield back.
Ms. Eshoo. The gentleman yields back. And I appreciate his
questions and comments.
I now would like to recognize the gentlewoman from
Washington State, one of our great doctors, Dr. Schrier. 5
minutes.
Ms. Schrier. Thank you, Madam Chair.
First, let me just say to our three patients--Ms. Smith,
Ms. McCorkell, and Ms. Hakala--I just have profound sympathy
and empathy for you, and I am so sorry for what you are going
through and the way that you have been treated. And I do
understand that--you know, that struggle that doctors go
through when it is so frustrating to not be able to put your
finger on it and do something, but I just want to express that
sympathy.
To Dr. Possick and Dr. Deeks, thank you for diving in and
embracing this uncertainty and the patients who are in distress
where you don't necessarily have a way of fixing. And I am
listening to all of these comments and thinking that, of
course, we need research at the NIH and CDC, but I am thinking
about the things that Congress can do, like how can--this is
the doctor thinking--like what can we do?
And one it sounds like we need to work with CMS to get an
ICD-10 code, even if it is sort of like possibly in post-COVID
symptoms not otherwise specified, something along those lines.
It sounds like we really need to continue to work on our social
safety net and healthcare coverage and FMLA to just keep people
afloat. And it also sounds like we kind of need like a new RADx
or a new warp speed to try to just take a stab at possible
therapies. And so I guess my first question--I have a couple
questions about this. One is we heard from Ms. Smith and Ms.
McCorkell about negative antibody tests leading to this
reluctance to diagnose, and I was just wondering, Dr. Deeks,
could you talk about how common this lack of an antibody
response is, and maybe does that then suggest a pathway to this
maybe being like a chronic viral infection that never really
stokes the immune system?
Dr. Deeks. So great question. Depending on how you define
it, maybe about 10 percent of people who develop COVID end up
being--either have low antibodies or they are sero negative.
They don't actually sero comport. Their antibodies remain
negative. And, interestingly, those are the people you would
think would have a lot of virus that would persist particularly
in tissues. And, interestingly, those are the people that you
would think would benefit from a therapeutic vaccine. They
didn't generate an immune response. They have no antibodies.
The virus is around causing disease. You get a vaccine. Now,
they have antibodies. The virus goes away. And I have heard
many anecdotes of people who have done that.
So it is one of those testable hypotheses. So we need to go
out and find people who are antibody-negative who have these
symptoms and do special tests to see if they are truly
infected. And they are easy to do, but only in research
centers. And to be honest, then you build up the immune system
to fix it.
Ms. Schrier. So here is the next question, which is related
to that, which is kind of like, right now, you have very few
tools, if no tools in your toolbox. And if there are all these
different pathways, you know, one is lingering infection, one
is autoimmune, one is, you know, blood clots. Do you ever
consider just empirically throwing everybody on aspirin, or it
is kind of opposite things? Do you just put people on steroids
for an overresponse or people on some sort of, you know,
immunomodulator if you think that you are going down an
autoimmune pathway? I am just wondering if you are already
thinking through those possible treatments.
Dr. Deeks. Yes. So that is happening, right. So you go to
clinics right now, and people will be doing that. They will be
giving statins because they are antiinflammatories. They will
be given hydroxychloroquine because it blocks certain
inflammatory pathways, and it is safe, and people give aspirin
for clotting. And, actually, I think, the various clinics have
their own sort of brand. And that is what a good clinician
would do that, right? I mean, you have a person in front of
you. They are sick. There is no treatment. You do the best that
you can. There is some rationale.
And so that is happening. And, from that, people will write
papers saying, ``Here is my hundred patients. I did this, and
here is what happened.''
And that will lead to clinical trials. So we are in that
process right now where I think clinicians are making it up as
they go along, as they should, doing the best that they can and
teaching each other what is happening.
But it is going to be years before we have targeted drugs
and randomized clinical trial data. In the meantime, I think,
not everyone would agree, you are somewhat obligated to try
your best.
Ms. Schrier. I hope it is not years. Thank you very much.
I yield back.
Ms. Eshoo. The gentlewoman yields back.
Pleasure to recognize the gentleman from Georgia, Mr.
Carter, for your 5 minutes, followed by Mr. Doyle of
Pennsylvania. And I don't have any other Members on tap. So
take it away, Mr. Carter.
Mr. Carter. Thank you, Madam Chair.
And thank you, Dr. Possick, Dr. Deeks for being here. We
appreciate this.
Dr. Possick, I wanted to ask you, in your written testimony
you mentioned that many of your patients are young adults and
adolescents. Why do you think that is?
Dr. Possick. Well, young adults certainly. We are not a
pediatric clinic, so haven't been seeing adolescents, but, you
know, I think it reflects potentially many things. We don't
know if perhaps younger people are more susceptible. There are,
as was referenced before, a large number of people in the 18-
to-39 age group who have been infected with COVID. As time has
gone on in older individuals and at-risk individuals have been
vaccinated first, we have seen the age profile of our clinic
population shift down. It is also possible that sicker people
with more comorbidities at baseline and a higher level of
disability at baseline don't register the changes to their
health in the same way that a healthy long-distance runner who
was working for a time would, right?
So some of it is where you started compared to where you
are, but I do think that there are--especially now a lot of
young people who are getting newly infected, unfortunately. And
that is reflected by the patient profile that we are seeing in
our ICUs as well, to some extent.
Mr. Carter. What are the treatments that are working?
Dr. Possick. I don't think that we can broadly say that
there is any treatment that is working for all patients. We
don't have that answer yet. As Dr. Deeks had suggested there
are things we try empirically. Sometimes they work for some
patients, other times not, but we are not in a position yet to
say that this is the regiment, this is the treatment that
works.
Mr. Carter. You mentioned something a little while ago that
concerns me, and that has to do with about how can we ensure
that we don't have a stigma that develops along with those who
have long COVID? I am very concerned about that, and obviously
you are too.
Dr. Possick. This hearing is an important place to start.
The fact that you have invited patient panelists is incredibly
important and sends an incredibly important message to the
establishment and to our whole community, but I think that,
again, naming has a powerful message. So arriving on agreed-
upon terminology for what patients are experiencing, then going
on to create our best guess at clinical criteria for what that
is, is important so that we can acknowledge and validate what
people are experiencing.
Mr. Carter. Dr. Deeks, any comments from you on that?
Dr. Deeks. I am passionate about that last question. You
know, HIV--we treat HIV, but people with HIV have stigma. It
never goes away, and maybe a couple days of living in that kind
of environment, but years of feeling--it wears you out. It is a
huge impact.
So we have got to destigmatize this syndrome--give it a
name, find a mechanism, have congressional hearings, have the
NIH devote a billion dollars to it. This is all good, and all
the media that is happening because these very powerful patient
groups, their impact is through the media, right? The New York
Times, Washington Post have been covering this extensively, and
that is partly why we are here today.
So the stigma is something we are fixing, and I cannot
overemphasize how much respect I have for this group spending
an entire day talking about this. I can't get doctors to spend
a whole day talking about this. So what you are doing today is
very therapeutic.
Mr. Carter. Well, thank you both for mentioning that about
the stigma part of it. I mentioned in the first panel that I
have got a dear friend who is, unfortunately, suffering through
some psychotic episodes and mental health issues as a result of
this, and that concerns me because I am very concerned about
his health, but this is real.
I think a lot of people said, ``Oh, I had COVID, and I
didn't even know it.'' And they just kind of passed it along as
being something that is not serious, but it is serious. And it
is something that we have to take seriously.
So thank both of you for being here today. And thank you,
Madam Chair. This has been a truly bipartisan hearing and a
good hearing today, so thank you for this.
And I yield back.
Ms. Eshoo. The gentleman yields back.
Now I believe, last but not least, my pal, Mr. Doyle. You
can wrap it up for us today. Five minutes.
Mr. Doyle. Thank you, Anna. And thanks for holding this
hearing. It is. It is very important. Thanks to both panels,
especially the second panel because you guys had to sit here as
long as we do. It is our job to sit here through the hearing,
but boy, sometimes when you are on that second panel, this can
be difficult. I really--I just want to thank Dr. Deeks and
Possick for being here. The questions I had were the ones I
wanted to talk to the NIH about, but I just stayed on, Anna,
because I wanted Chimere and Lisa and Natalie to know that, to
hang in there.
My son Kevin is a COVID long-hauler. I have been watching
this up close and personal every day how this young, healthy
athletic person, who was the most physically fit guy in our
family and had COVID and had no--wasn't hospitalized. You know,
couple days he didn't feel good and remember him calling me on
the phone and said that was nothing. And here we are going on 4
months later with the, you know, sleep disorders and the
trouble breathing and pain in his chest and just this fatigue.
This is a guy who couldn't sit at a house. I mean, he was
just out exercising. He has a gym in his basement that he works
out in every day, and now he can't get out of bed sometimes and
had to start going on disability at his job. So, you know,
there is a lot we don't know about this yet, but there is a lot
we do know. And there's doctors out there, by the way, that are
treating. You are not going to get treatment in the
establishment hospital. I live in Pittsburgh. We have one of
the largest academic medical centers in the country, UPMC, and
we have Allegheny General. And they have COVID long-hauler
clinics.
But right now there is really no treatments there. You go
there--because my son has been to both of them, and they ask
you a bunch of questions, and, you know, and they treat
symptoms. If you say you are having trouble breathing, they
will let you see the pulmonologist. If you have neurological
problems, they will send you to the neurologist. But they are
not treating--there is not a prescribed approved cure or
treatment, I should say, for COVID long hauler right now that
NIH or FDA or CDC--but there are doctors out there, as Dr.
Deeks said, trying to do their best with what they can. There's
antiviral medicines out there. There's other medicines that
have been used to treat HIV/AIDS.
I know the regimen my son is on, and it is starting to help
him. But know this: We are going to continue to push the people
here at NIH and CDC to make sure that we are not leaving any
stone unturned. We may not need to reinvent the wheel. That is
why I pressed the NIH to also test some of these drugs that are
available that are off-label right now being used to see if
they are effective or not. And, you know, we have really got to
press--we have got to do research. There is no question about
that.
NIH does a great job. We have given them the funding they
need, but they need to also step up their foot on the gas on
treatment because there is a lot of you out there suffering
every day, and I know you can't wait a year or two for some
study to come back saying we think we have got this figured out
now.
So I just want to thank the three of you for coming and
telling your stories, and that is the only reason I stayed on
for this second panel to make sure that I expressed to the
three of you that we all have a lot of empathy for what you are
going through.
And Anna, thank you. This is an important hearing that we
needed to have, and we need to like--we need to not forget
about it after this hearing. We need to keep pressing ahead,
and I know you will. So thank you for that. And that is all.
I will yield back my time.
Ms. Eshoo. Well, thank you, Mike. And I think that, too,
our patient witnesses that you wouldn't have thought that you
would hear a Member who is a dad and described his son and what
his son is going through. But this virus is not discriminatory.
It doesn't care--it doesn't regard ZIP Codes, job titles, and
all of that.
All of my thanks on behalf of all of the Members, and many
of them have signed off because they already got to ask their
questions and we have been together for a long time today. I
also thank you for listening in--not necessarily being part of,
but you were there for the first panel, and I can't help but
think that what they shared with us is important information to
you because it is a piece of it. It is not all of it, but it is
a very important piece of it. And that very important piece,
the Congress has already put in place significant dollars for
the research.
To each one of you, we really are very, very grateful to
you. There is nothing like the voices of those that are the
ones that are affected, but then also those that are the
professionals that are one-on-one with the patients, know the
setting, know where the shortfalls are.
To Dr. Deeks, you are looking way into the future using the
experience of your work of the past with HIV/AIDS patients, and
I think that that is highly instructive as well. So, you know
what? We have been the students, and you have been the
teachers, and for that, we are all very grateful. And we are
not going to let go of this. Seems to me that we need to come
up with a designation and go from there, but in between the
responses from the researchers and others, we need to have
wraparound services for people because they can't function.
I mean, you know, you have said over and over again, you
have told your stories and left an imprint on us of how
debilitating this is and that, you know, with that
debilitation, what do you do? You can't--you simply can't
function. So we need wraparound services that are designated
for those that have this.
So bravo to all of you and our thanks. Many Members will be
submitting written questions to you, and we ask you to respond
in a very timely way, and we thank you in advance for that.
So now we have just a little housekeeping, and that is that
I want to ask my colleague, we do have 12 documents to submit
to the record, Mr. Guthrie. I don't think you want me to read
through all of them. I am sure they are all important and
wonderful documents for the record.
So I would ask for unanimous consent, to put in a unanimous
consent request that the statements be placed in the record.
Mr. Guthrie. OK. Before I say I don't have any objection, I
just want to say thanks to all the witnesses too. Your
testimony is compelling. The physicians that have been on, the
healthcare providers that have been on this, and we are dealing
with this in real time, and we are learning as we go and we are
making a big effort to really understand this on both sides of
the aisle, and your testimony today was very helpful. Very
helpful in that. And so we thank you so much.
And I don't have any objections. I assume everything we
submitted is on the list there. I think our staff has looked at
that, so I don't have any objection.
[The information appears at the conclusion of the hearing.]
Ms. Eshoo. OK. Thank you, Mr. Guthrie.
And pursuant to committee rules, Members do have 10 days to
submit your additional questions for the record. And I have
already asked that the witnesses respond promptly to any
questions that you have received.
And with that and our collective thanks, the subcommittee
is now adjourned.
Thank you, everyone.
[Whereupon, at 4:56 p.m., the subcommittee was adjourned.]
[Material submitted for inclusion in the record follows:]
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